a strategic analysis of impact of covid-19

2

A Strategic Analysis of Impact of COVID-19

On persons with disabilities in India

A Collaborative Research Study conceptualized by CBM and Humanity & Inclusion

(HI) and Indian Institute of Public Health Hyderabad (IIPH-H), Public Health

Foundation of India (PHFI), and conducted by IIPH-H.

Support and Funding:

This study was funded by CBM India Trust, and Humanity & Inclusion (HI)

Report prepared by:

Indian Institute of Public Health, Hyderabad, Public Health Foundation of India, ANV

Arcade, 1, Amar Co-op Society, Kavuri Hills, Hyderabad, India.

Date and year: August, 2020

To cite this report:

A Strategic Analysis of Impact of COVID-19 on persons with disabilities in India.

Murthy GVS, Kamalakannan S, Lewis MG, Sadanand S, Tetali S. August 2020,

Hyderabad, India. Funded by CBM India Trust, and Humanity & Inclusion (HI)

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Acknowledgements

We thank the following people for their immense support during literature search, data

collection and facilitating IDIs/FGD and survey:

Priyanka Agarwal, Sarah Jameel, Kiranmai K, Anantha Akhila Reddy and Runjala Zeena

Florence, Neha M, Kriti Shukla, Anupama Sahay and Jayanthi Sagar, Kumar Ratan

(Programme Officer, CBM), Shiva Mohan Rao (Programme Officer, CBM), Shakeeb A.

Khan (Programme Officer, CBM).

We acknowledge the valuable guidance and regular support from Dr. Sara Varughese,

Country Director and Managing Trustee, CBM, Umesh Baurai, Advocacy & Livelihood

Manager, Ms. Fairlene Soji, Programme Manager, Mr. Ravi Ranganathan, Programme

Manager, Mr. Nirad Bag, Programme Manager & Mr. T. D Dhariyal, CBM Advisor, Former

State Commissioner for Persons with Disabilities, GNCT of Delhi & Dy. Chief

Commissioner for Persons with Disabilities, Government of India.

We are thankful to Handicap International India-Nepal programme team members, Willy

Bergogne (Regional Programme Director), Raju Palanchoke (Technical Unit Manager) Jose

Kurian (Disability and Employment Advisor), Reena Shakya (MEAL Manager), Annie Hans,

Disability Inclusive Development Coordinator) for their support with this study.

We also thank the following partner organisations for participating in the study: All India

Confederation of the Blind (AICB), Anbagam Special School, Anchalik Samrudhi Sadhana

Anusthan (ASSA), Bethany Society, Bahuddesi Viklang Jan Foundation (BVJF) Christian

Fellowship- CF SHORE, Chotanagpur Sanskritik Sangh (CSS), Centre for Integrated

Development (CID), Ferrando speech & hearing centre (FSHC), Himalayan Jyoti Samiti

(HJS), Karuna Social Services Society (KSSS), Madona School, Mobility India,

Margdarshak Seva Sansthan (MSS), Nav Bharat Jagriti Kendra (NBJK), NIRPHAD, Naman

Sewa Samiti (NSS), NBCD-Prerana, Prajayatna, Parivaar, Pratham, Poona Blind Men’s

Association, Purvanchal Gramin Seva Samiti (PGSS), Swabhiman, Sewa Sadan Eye

Hospital, Services Centre for the Disabled (SED), Sanjeevani Trust, Sundarban Social

Development Centre (SSDC), Society for Action in Disability and Health Awareness

(SADHANA), The Leprosy Mission Trust (TLM) & Vikalp Foundation.

We would also like to thanks Mr. Ramesh Negi, State Commissioner for Persons with

Disabilities, Government of NCT of Delhi & Dr. Shivajee Kumar, State Commissioner for

Persons with Disabilities, Govt. of Bihar for their time and inputs for the study.

We thank all the participants for patiently responding to our questions and thank the NGO

partners for facilitating the data collection.

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Disclaimer

The findings and recommendations of the study are entirely of the research team based on the

information collected during the COVID-19 pandemic situation. The findings may not

reflect similarity in post lockdown era. We have made every effort to ensure that the

information is correct to the best of our knowledge at the time of the publication. However,

we do not take responsibility for errors and/or omissions within the study.

We allow the use of this publication by others interested, if it is not altered in a way that

could mislead readers and it is not used for commercial purposes.

Any part of the study can be published or reproduced for the educational, research and

information dissemination purpose by acknowledging the authors of the study.

CBM, HI and PHFI/IIPHH shall not be held liable for any improper use of the information

and assumes no responsibility for anyone’s use of the information.

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Table of contents

S.No Subject Pg. No

1 Acknowledgements 3

2 List of Tables 6

3 List of Figures 8

4 Executive Summary 9

5 Abbreviations 16

6 Background 17

7 Objectives 22

8 Methods 23

9 Results 30

10 Case studies 80

11 Key Findings and Discussion 82

12 Conclusion 90

13 Recommendations 91

14 References 96

15 Annexures 99

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List of Tables

Table.

No Details Pg. No

1 Framework of questions and sub-questions related to the objectives 24

2 Characteristics of the study population 30

3 Age and type of disability 31

4 Distribution of respondents across region and states 31

5 Usage and sanitization of assistive devices 32

6 Sanitization of assistive devices across different disabilities 33

7 Impact of lockdown on medical care & treatment 34

8 Impact of lockdown on medical care & treatment among Persons with

disability with pre-existing medical conditions 34

9 Impact of lockdown on access to out-patient services 35

10 Impact of lockdown on access to emergency medical services 35

11 Impact of lockdown on accessing medicines 36

12 Impact of lockdown on access to blood pressure monitoring 37

13 Impact of lockdown on access to regular diabetes monitoring 37

14 Impact of lockdown on access to surgical procedures 38

15 Impact of lockdown on rehabilitation services 39

16 Impact of lockdown on rehabilitation services and therapy 40

17 Impact of lockdown on participants’ mental health 40

18 Level of stress & anxiety since the COVID-19 outbreak 41

19 Weighted average score of the items related to mental health 41

20 Association of demographic factors with fear, stress and anxiety 42

21 Association of demographic factors with participants mental health 42

22 Psychosocial problems faced by persons with disability since the

COVID-19 outbreak 43

23 Access to mental health services and emotional support 43

24 Mental Health Impact of COVID-19 on caregivers 44

25 Impact of lockdown on Activities of daily living 45

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26 Impact of lockdown on livelihood (supply chain, farm inputs,

transportation, updates) 45

27 Impact of lockdown on livelihood (pensions, wages, loans) 46

28 Impact of lockdown on education 47

29 Impact of lockdown on participants’ social empowerment 47

30 Distribution of percentage of impact of lockdown among Persons

with disability in each domain 48

31 Factors associated with impact of lockdown 50

32 Profile of In-depth Interviewees and Focus Group Discussion

Respondents 51

33 Difficulty in accessing medical and rehabilitation services during

lockdown and after unlock/easing of lockdown 65

34 Proportion of participants experiencing various issues during

lockdown and unlock phase /easing of lockdown phase 66

35 Comparison of participants’ feelings during lockdown and after

easing of lockdown 67

36 Level of stress & anxiety among the participants 68

37 Participants’ experience during lockdown and after easing of

lockdown 68

38 Access to information related to mental health 69

39 Education and Livelihood 70

40 Impact of lockdown on participation and social empowerment of

Persons with disability 71

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List of Figures

Fig.No Details Pg. No

1 States where the study was conducted – Depicted in yellow 26

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Executive Summary

The COVID-19 pandemic is proving to be a challenge for achieving the SDGs. How far this

will impact the deliverables especially those that are time-bound is difficult to state now. The

challenge is of Herculean proportions for many low- and middle-income countries like India.

The health system is fragmented - quality can be inconsistent and coverage inadequate. The

meagre wages and fragmented health systems compromise the situation even more. And

within countries like India, the steep differentials between regions, sex and disadvantaged

populations including Persons with disability can be further detrimental to their wellbeing if

not recognized and managed in a timely manner.

It was therefore felt that there is a need to understand the effect of the COVID-19 pandemic

on lives of Persons with disability, their care and support systems, nutrition, livelihoods,

social participation, mental health and access to health and education services. The specific

objectives of the study were to assess the level of disruption on the living conditions of

Persons with disability due to COVID-19 and related restrictions and to generate evidence to

inform actions for future pandemics or emergency preparedness.

A cross sectional, mixed-methods approach, using a purposive snowballing technique was

adopted for the study. Data was collected from across the country using tools like telephonic

semi structured interviews and focus group discussions facilitated through the network of

NGO partners providing care and support for Persons with disability. persons with

disabilities, NGO leadership, government program officers and caregivers of Persons with

disability were included. The cross-sectional survey was repeated for a 2nd time, 6 weeks after

the first interview on a randomly identified 25% sub sample to discern any change in trends

over this period.

Quantitative Findings

A sample of 403 respondents were included in the study, from 14 states. The median age of

Persons with disability who responded was 28 years with an interquartile range (19, 36.5

years) and 60% were males. 51.6% had physical impairments, 16.1% had visual impairments,

10.9% had intellectual impairments and only 9.2% had speech and hearing impairment.

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Four out of five (74.6%) persons with disabilities using assistive devices sanitized their

devices regularly. Soap and water were used most commonly. Use of alcohol-based sanitizers

was significantly higher among those with visual impairment.

Health Care

Overall, 2 out of every five people (42.5%) with disability reported that lockdown had made

it difficult for them to access routine medical care. Among those with a pre-existing medical

condition (which was 12.7%), 58% stated facing difficulty in accessing routine medical care.

Therefore, persons with disabilities with antecedent medical problems suffered significantly

more than those who did not have an antecedent health condition. Nearly a quarter reported

difficulty in getting their medications while 28% reported postponing their scheduled medical

appointments because of the lockdown. More than half the Persons with disability perceived

that continuous lockdown would have a deleterious effect on their health.

Just above a third (35%) reported the need of out-patient services at hospitals/clinics during

lockdown of whom more than half (55.6%) had difficulty in accessing out-patient services.

16.6% stated that they needed emergency medical care during the lockdown among whom

45% had difficulty in accessing the services. Of the 35.7% needing medicines during the

lockdown, nearly half (46%) stated that they faced problems in accessing the same. 58% of

those who needed regular blood pressure monitoring could not get it done during the

lockdown. A third of those who stated needing regular blood sugar estimations expressed

their lack of access to such a service. 5.2% of respondents with disability stated that they

needed a surgical procedure of whom 47.6% could not attend for the same due to the lock-

down. Of those needing surgical intervention, three fourths had speech and hearing

impairment while 9.5% had visual impairment.

Rehabilitation Services1

Among the 17% needing rehabilitation services, 59.4% failed to access the same. Reported

difficulties in access were same across the different groups of disability, thereby highlighting

that concerns of persons with disabilities are similar across disabilities. Most people needing

1 Rehabilitation is defined as "a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments." (WHO, 2011)Rehabilitation is instrumental in enabling people with limitations in functioning to remain in or return to their home or community, live independently and participate in education, the labour market and public life.

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rehabilitation services said it was for physiotherapy which was compromised during the

lockdown.

Mental Health

The important psychological reactions to COVID-19 pandemic vary from fear and anxiety,

panic, feelings of hopelessness to depression. Fear of getting infected with novel corona virus

and loss of income were affecting persons with disabilities the most. 81.6% reported

experiencing moderate to high levels of stress. This shows that there is an urgent need to

ramp up mental health support services for persons with disabilities.

Stigma followed by discrimination and effect on family relationships were leading psycho-

social problems reported by Persons with disability. Isolation, abandonment, and violence

were other worrying psycho-social problems reported showing the lack of empathy during the

difficult times.

Among the 34.5% who stated that they needed information on mental health issues , only

25.9% had access to such services. Only 20% were able to get regular mental health

counselling or therapy related services during the COVID-19 outbreak and lockdown, and

11.4% faced problems getting their regular psychiatric medicines.

Mental Health concerns of caregivers of Persons with disability were also ascertained and

important leads were observed. Half of them felt moderately stressed caring for children or

other family member with disability. 58.2% were unhappy that the therapy sessions for their

child with disability has ceased during the lockdown.

Activities for Daily living

Just over four out of every five people (81.6%) with disability stated that they needed

assistance for daily living and family carers supported most. Because of the family support,

55.8% felt that they can manage if such a situation of lockdowns arose again.

Livelihoods

As expected, livelihoods were adversely affected due to the lockdown. 84.2% stated that their

daily lives had been impacted. The lack of mobility both in rural and urban areas led to

distress. For a third (34.3%), even drinking water supplies were affected. A third (33.1%) also

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mentioned that their pensions were affected. Around 45.7% of persons with disabilities were

forced to borrow money during the lockdown mainly for livelihood. 84.7% had to borrow or

request for support for food to cope with financial crisis. 18.2% reported that loans were

advanced by inclusive cooperative societies.

Education

An overwhelming proportion (73.3%) stated that children were distressed with school

closures and it had affected learning (school level education). It should be remembered that

school closures do not impact only the academics but also have profound impact on school

meal programs, special education, therapy, counseling and peer-support and kinship.

Social Participation

Social participation and empowerment activities were affected in more than half the

respondents with disabilities. The maximal impact was on regular functioning as members of

Disabled People’s Organizations (DPO). 54.2% of the respondents with disability felt that

working/participation at the community level and Panchayati Raj Institutions (PRI) will be

affected after the covid-19 pandemic.

Overall, it was observed that the impact of COVID 19 was the same irrespective of any age

group, gender, or marital status. The impact of Corona virus pandemic on access to

rehabilitation services and participation in social empowerment activities differed

significantly among people having different type of impairments. Due to COVID-19,

occupational status had a significant adverse impact on access to all routine services.

Pensioners reported an adverse effect of COVID-19 on all domains while persons with

disability with children reported adverse impact in relation to accessing medical services,

rehabilitation, and mental health.

Qualitative Findings

We conducted 11 in-depth interviews (IDIs) and 2 focus group discussions (FGDs) in the

lockdown period and 2 FGDs after easing of lockdown. People with disabilities, ‘carers’ and

relevant stakeholders shared a wealth of information in their own words on the impact of

lockdowns on their lives. Lockdown has had a profound impact on Persons with disability.

The major domains affected were livelihood and mental health. Lockdown had a negative

psychological impact on Persons with disability and one of the most common reason was

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economic difficulties. Some Persons with disability stated that COVID-19 had broken their

confidence and resolve. Many faced difficulties in accessing necessities such as food, mainly

vegetables and pulses, whereas the government provided rice. Access to medicines was

difficult mainly due to travel restrictions in their region. In addition to difficulties in

livelihood and the profound psychological impact, the lack of information in accessible

formats was highlighted by most interviewees as was the lack of public transport when they

needed to access general health services and treatment. What was disconcerting being that

there were reports of large number of children with disabilities being abandoned by their

parents and had to reside in institutions.

Communication was badly affected during the COVID-19 pandemic as NGOs were unable to

reach Persons with disability needing health services or consultations. A major concern that

was raised was the lack of an inclusive response during COVID-19 as the needs of Persons

with disability was not given adequate attention when guidelines on COVID-19 response

were released. Another issue that was all pervasive was the financial impact of COVID-19 on

Persons with disability and their families. Not only were incomes compromised but even

withdrawing their money from their bank accounts was a challenge. The adverse financial

situations led to using family savings earmarked for other purposes for feeding themselves

and keeping themselves alive and secure; this could also lead to borrowing money for health

services and treatment if any family members fall sick. This expenditure which can be

potentially catastrophic renews the need for universal, inclusive health care which protects

all, including persons with disability from catastrophic health expenditures.

The responses by stakeholders on government future preparedness believed that the

governments may not be prepared for another wave of COVID-19 or a similar health

emergency. Respondents opined that it would have been better if adequate time for preparing

for the lockdown and its consequences was given at the beginning so that adequate

arrangements for food and support could have been made. Stakeholders indicated that

government should address the livelihoods of Persons with disability and their family so that

lockdowns such as the current one has minimal impact on Persons with disability lives.

Adaptation to COVID-19 and the lockdown and unlocking process

Trends over the COVID-19 timelines were compared by ascertaining responses from Persons

with disability at two time points during the life course of COVID-19 in India. Positive trends

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were observed once strict lockdown restrictions were withdrawn. Difficulty in accessing

emergency medical care reduced significantly once restrictions were lifted. There was also a

significant difference in Persons with disability being able to access rehabilitation services.

One striking feature observed was that contrary to popular perception, online consultation

was not very attractive both during the lockdown, or later on, and this should be a good

indicator for planning response services.

There were significant differences reported in stigma and discrimination which reduced

significantly after the unlock process started. The mental health status and apprehension

about getting infected also reduced significantly after the lockdown curbs were lifted.

However, a substantial proportion of Persons with disability exhibited stress both during and

after lifting of the lockdown. On similar lines, there was no significant difference in relation

to caregiver’s mental health during lockdown and after easing of lockdown. This aspect needs

targeted attention for the future.

Regarding items pertaining to education, livelihood, and social empowerment, there was no

statistically significant difference in proportions before and after easing of lockdown. This

could be because the process of getting back to pre-lockdown state has not yet been seen or

achieved with many restrictions including on public transport still in place in many regions of

across India. If the assessment is repeated a few months after all restrictions are withdrawn,

it will give a better idea of people’s perceptions after the pandemic completely ceases.

The apprehension of visiting a hospital for care persists as was seen in the study where 72.9%

hesitated to go to hospital because of fear of contacting COVID. 86% were scared to go out

and meet others. 78.1% did not fear the lack of companionship, both during and after the

lockdown. Some program managers opined that the public health system was concentrating

only on COVID-19, to the determinant of other health conditions at all levels of care from a

Primary Health Centre to a district hospital. Concerns were also expressed about the cost of

services being charged by hospitals.

The findings of this study have highlighted the concerns of Persons with disability, their care

givers and the health and developmental systems due to COVID-19. These observations

should be used to prepare protocols and guidelines to tackle such emergencies in the future.

Advocacy with the governments is critical so that the response to such a health or non-health

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emergency in the future can be quickly mounted and operationalized. An inclusive plan to

mitigate the adverse impact should be in place quickly and implemented immediately rather

than losing a lot of time in the response cycle. Some key recommendations include:

a) Special assistance and disabled-friendly COVID-19 protocols must be available and

accessible to them.

b) Provide supplies such as medicines, disinfectants, masks etc. for Persons with

disability to protect themselves as well as others in their families from COVID-19

infections.

c) Information on rehabilitation, therapy support and other specific services must be

made available to them in accessible formats.

d) Enable tele-rehabilitation and support needs of Persons with disability, especially

children who were receiving services through the RBSK programmes.

e) Online counselling must be started in management of stress and fear and anxiety.

f) Respective State Government must ensure Relief measures, special financial

assistance, subsidies, furlough schemes, access to interest free loans for improving or

at least to maintain current livelihoods.

g) Loans available from cooperatives, and the obstacles to availing such loans must be

quickly cleared.

h) Best practices such as organic farming and dairy and the income from these initiatives

must be promoted rapidly.

i) The government should ensure that pensions are not negatively impacted in future.

j) Online education for children in schools must be provided in accessible formats. To

avoid the pressure of buying smart phones by parents, education must be provided in

formats that are easy for parents to receive, both economic and technology wise. For

example, Special educators could prepare individualised education plans for children

and train the parents through phone or a school website podcast to deliver this to their

children at home.

k) Provision of free internet services for Persons with disabilities who require access to

internet for education must be explored.

l) Prioritise Persons with disability when developing a program or strategy to combat

emergency situations like the pandemic.

m) Include Persons with disability in the development and implementation of any plan,

policies, strategies and programmes

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List of Abbreviations

ASHA Accredited Social Health Activist

AWW Anganwadi Worker

COVID-19 Corona Virus Disease 2019

DPO Disabled Peoples’ organization

FGD Focus Group Discussion

IDI In-Depth Interviews

IIPHH Indian Institute of Public Health - Hyderabad

MGNREGA Mahatma Gandhi National Rural Employment Guarantee Act

NCPEDP National Centre for Promotion of Employment for Disabled

People

NDMA National Disaster Management Authority

NGO Non-Governmental Organization

NSAP National Social Assistance Programme

PHC Primary Health Centre

PPE Personal Protective Equipment

PRI Panchayat Raj Institution

RBSK

SACDIR

Rashtriya Bal Swasthya Karyakram

South Asia Centre for Disability Inclusive Development &

Research

SDG Sustainable Development Goals

WASH Water, Sanitation and Hygiene

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A Strategic Analysis of Impact of COVID-19

On persons with disabilities in India

Background

Persons with Disabilities are more vulnerable and are at higher risk from Corona Virus

Disease 2019 (COVID-19). It is not because of their disability but because they generally

experience co-morbidities and other underlying conditions (Turk & McDermott 2020, UN

2020). Restrictions imposed because of the pandemic lockdown exposes persons with

disabilities to substantial additional risk because of disruption to essential services and

support (Negrini 2020, Kuper H 2020, WHO 2020). This is especially true for a country like

India where access to health, rehabilitation and social care services are very limited (GVS

Murthy 2020, GVS Murthy 2014, GVS Murthy 2018, GVS Murthy 2020). Furthermore, one

must not forget that disability is both the cause and consequence of poverty (Ambati N 2009,

D’Souza 2018).

The COVID-19 pandemic and consequent lockdown have come with multitude of challenges

for persons with disabilities. The extension of lockdown and suspensions of all forms of

activity has also led to marginalisation of persons with disabilities and they continue to face

penury and deprivation. Some of the key challenges are discussed below:

Access to Healthcare: In order to impose lockdown, the public transport facilities were

suspended throughout the country (which has still not been restored in many parts). This

affected access to health care services for Persons with disability, elderly, Persons with

disability, among whom those with mental health issues suffered the most. There were gaps

in access to general health services as well as specific health services such as dialysis

services, blood transfusion, leprosy management, chemotherapy and rehabilitation services.

Access to health care services for Persons with disability is already a challenge in India –

owing to inaccessible physical infrastructure, facilities and information. The restriction or

sometimes, shutting down of essential health services has made the access even more

challenging, due to restricted transport networks. The two-way association of disability and

non-communicable diseases (NCDs) is well established. People living with NCDs can

develop impairments, and disability itself can be a risk factor for NCDs. The underlying

health conditions and exclusion from health care services during lockdowns render Persons

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with disability more vulnerable to multiple health conditions including NCDs. (Prynn &

Kuper, 2019)

As per the survey conducted by WHO in 155 countries during the 3-week period in May

2020, it is confirmed that impact of COVID pandemic is global and low- and middle-income

countries are the worst affected. The report states that prevention and treatment services for

non-communicable diseases have been severely disrupted since the COVID-19 pandemic.

More than 53% of the countries surveyed have had partially or completed disturbed services

for treatment of hypertension; 49% for treatment of diabetes and diabetes related

complications; 42% for treatment of cancer and 31% for cardiovascular emergencies.

Particularly, India has reported 30% fewer acute cardiac emergencies reaching health

facilities in rural areas in March 2020 compared to previous years. (WHO, Rapid assessment

of service delivery for NCDs during the COVID-19 pandemic, 2020)

The attempt to convert already overburdened public health facilities into dedicated COVID

facilities, without alternate arrangement endangered many lives. In 94% of the countries

surveyed the resources – human resource and financial are diverted towards mitigation of

COVID-19 and many public screening programs were also disrupted. (WHO, Rapid

assessment of service delivery for NCDs during the COVID-19 pandemic, 2020) .

Rehabilitation services: Rehabilitation includes interventions that are required when a

person experiences or is likely to experience functional limitations due to a health condition

or ageing, injuries, trauma etc. The functional limitations are difficulties in seeing, hearing,

communicating, mobility, having relationships, thinking and so on. The rehabilitation

services include occupational therapy, physiotherapy, speech therapy, cognitive behavioural

therapies, prosthetics and orthotics and special education. In India, the facilities providing

these services are already scarce and are located in the tertiary level centres; and in urban and

peri-urban areas. This makes accessing rehabilitation services particularly challenging for

Persons with disability. As per WHO some countries have more than 50% of people who

require rehabilitation services do not receive them. (WHO, WHO.int, 2019).

In India, a majority of the Persons with disability reside in rural areas where accessibility,

availability, and utilization of rehabilitation services is the major challenge. (Saya, Roy, &

Kar, 2012) Lack of physiotherapy, speech therapy among children with disabilities can affect

their both physical and mental health. (Chari, et al., 2020).

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Mental health care: A country-wide survey of over 2000 Persons with disability across 23

states and Union Territories in India, revealed that 75% of the persons with disability were

living with emotional challenges such as anxiety, depression and suicidal thoughts.

Lockdowns, and the subsequent loss of employment and financial crisis could cause severe

socio-economic distress and is a contributing factor for symptoms of mental health illness,

anger and anxiety. (Kocchar, Bhasin, Kocchar, & Dadlani, 2020).

The lockdown which was initially proposed for 21 days was eventually extended for another

3 weeks. The longer lockdown and quarantines are known to be pre-dominant stressors which

have direct correlation with the mental health of the individuals. (Brooks, et al., 2020).

Longer quarantines have a direct correlation with the mental health outcomes and the

duration of the lockdown is a predominant stressor affecting the mental health of individuals

(Brooks et al., 2020).

Furthermore, for persons with mental illness or epilepsy, reduced access to medication could

lead to relapse of symptoms, as can the compounded stress. For persons with substance use

disorders, sudden withdrawal leading to seizures, delirium, agitation, and even suicide have

been described. (NIMHANS, 2020). It has been recorded that the substance abuse increases

in people during and after a pandemic (Clay & Parker, 2020) and in a study it was seen that

26.3 % of respondents started consuming more alcohol/drugs/tobacco. (Kocchar, Bhasin,

Kocchar, & Dadlani, 2020)

Impact of disruption in daily routine: Several changes in day-to-day activities,

redistribution of home chores, loss of job and greater time spent with those living together,

reactions can range from boredom and moodiness to anger, irritation, and frustration.

Unpredictable, uncertainty and a sense of loss of control are the pathogenic agents for

anxiety, panic, and depression. (NIMHANS, 2020) Another emerging concern during

COVID -19 Pandemic and lockdown is surge in suicide cases, In India over 300 people

committed suicide during lockdown period. Of these 80% committed suicide because of

stigma, isolation, loneliness and fear of being infected. (Rana, 2020). Social isolation of the

elderly population has led to genesis of concerns like neurocognitive, auto-immune

cardiovascular and mental health. (Santini, et al., 2020)

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Access to Education: It is generally perceived that children are not at a heightened risk of

this pandemic but the crisis has had profound impact on their wellbeing, particularly for

children with disabilities. The lockdown has also put them at an unfair disadvantage in the

field of mainstream education. (UNSDG, 2020). Additionally, many State governments in

India have a mid-day school meal program which provides for a third of their daily calorie

requirements and half their protein requirements. These programs were suddenly stopped

with closure of schools. School sports which contribute to improving health status also

suddenly ceased.

According to Census 2011 there are 40 Lakh learners with disabilities in the age group 5-19

years, who have been disproportionately impacted by sudden changes in the teaching learning

methods. Even after months of COVID-19 pandemic and lockdowns, no dedicated

arrangements have been made or announced by concerned departments or the ministries

about structure and accessible delivery mechanisms or educational services for children with

disabilities during the pandemic.

Livelihood: As the lockdown progressed, over 23.7% of the workforce in India is rendered

unemployed and has pushed millions into poverty and deprivation. Nearly 10 crore jobs were

reported as lost, within the first five days of the lockdown. Besides, some industries, offices,

shops, hospitality sector and the vast informal sector have collapsed due to the shutdown with

little chances of immediate recovery. An estimated 121.5 million jobs were forfeited by the

lockdown in its first month, in April 2020. This loss narrowed down to 100.3 million in May

and then dramatically to a much smaller, 29.9 million in June. July 2020 saw a further

reduction in this loss of jobs to 11 million. (CMEI, 2020). Whether this afforded any benefit

to Persons with disability is unknown.

Only 21 % of all employment in the country is in the form of a salaried job which are more

resilient to economic shocks compared to the unorganised sector like a daily wage labourer.

As a result, job losses among them accounted for only 15 per cent of all job losses in April

2020. Among the persons with disabilities aged 15 years and above, worker population ratio

in usual times is a mere 22.8% (MOSPI, 2018).

The EVARA survey report also states that 64% of the Persons with disability are facing

financial crisis with 60% of them having no income. Furthermore, owing to disruption in the

disbursement of disability pension, many Persons with disability did not receive any pensions

21

from months. (Kumar, Aparajita, & Suman, 2020). In a survey done by Help Age India with

sample size of over 5000 elderly (aged 60 years and above), 65% of respondents stated that

COVID 19 has impacted their livelihoods, 61% of those impacted this way were from rural

areas and 39%% from urban areas. (The Elder Story: Ground reality during COVID-19,

2020). Moreover, 62% of the respondents reported to be suffering from chronic diseases

require management of specific protocols of medical consultation, rehabilitation and

medication. In another survey done by NCPEDP covering 1,067 persons with disabilities -

73% Persons with disability reported that they were facing particular challenges due to

imposed lockdown; 57% reported facing a financial crisis; 13% spoke of challenges in

accessing rations, while 9% were facing obstacles in access to healthcare and medical aid.

Response in India: Too little, too few: Persons with disabilities account for 2.21% of

India’s population as per 2011 National census (Census of India 2011). In the budget

estimates for the fiscal year 2019-20, support services for persons with disabilities amount to

0.22% of public expenditure, which translates to 0.03% of gross domestic product. Only

7.6% of working-age adults with disabilities are covered under the Indira Gandhi National

Disability Pension Scheme that is one of the five schemes under National Social Assistance

Programme (NSAP). In contrast, state schemes cover 42.78% of persons with disabilities

aged between 18 and 59 years (NSAP 1995).

Gaps in social protection measures for persons with disabilities: Although the

government of India announced top up on NSAP pensions to current beneficiaries, it converts

to a value of only 14 USD per individual for a duration of three months. This is below 20% of

1.9 USD per day poverty line criteria in 22 states. In the absence of ration cards which are

mandated to receive food kits, Persons with disability utilized the immediate cash transferred

through advance pension benefits (as announced in the states of Jammu and Kashmir, Delhi,

Tamilnadu, Himachal Pradesh and Odisha), depleting their emergency reserves within four

months. Kerala is the only state to adopt a universal approach for ensuring food security.

Maharashtra and Tamil Nadu are grappling with a huge upsurge in cases post nation-wide

lockdown and have either dysfunctional or partially operating helplines neglecting the needs

of persons with disabilities in rural areas. In Delhi and Maharashtra, a myriad of issues like

backlogs in usual pension payments, problems with Jan Dhan (People’s Wealth) accounts and

absence of payment points for those without bank accounts expose the systemic deficits in

22

reaching out to the most vulnerable in times of absolute need. Additional literature and

relevant citations are presented in Annexure –1.

With this background and given the multi-layered vulnerability and risk exposures

experienced by persons with disabilities in India, there are numerous contributory conditions

for them to experience detrimental effects from this pandemic situation (Jesus TS 2020).

There is no information related to how persons with disabilities combat the pandemic

situation and remain safe and healthy in India (Srilakshmi B 2020). It is likely that they

experience more hardships to access information related to prevention than from the risk of

COVID-19 infection itself (Srilakshmi B 2020). Especially because the general information

available from governments on COVID-19 is not in an accessible disabled friendly format

(Khetarpal 2020).

In this prevailing situation, it is absolutely crucial to gain insights of the impact of COVID-19

and the related lock-down measures imposed on persons with disabilities in India. With

timely funding and support from CBM and Handicap International, IIPH-SACDIR undertook

this initiative. This research study helps to understand the impact of the pandemic situation

and the needs of persons with disabilities in India to combat the same. This exercise was to

also provide useful insights on how best to strategically develop preparedness and mitigation

plans and meet the needs of the persons with disabilities in India not just for this pandemic

but for any similar catastrophes in the future.

Specific Objectives of the study

Determine the level of disruption in the lives of persons with disabilities during

lockdown due to COVID19 and during the phased opening up in the country.

Understand how the availability of funds for persons with disabilities related to

welfare / development would be impacted.

Generate evidence and to inform actions for health emergency preparedness in future

for persons with disabilities.

23

Methods

Study Design: A cross sectional, mixed-methods approach was adopted to identify and

understand the answers for the proposed objectives. Using purposive sampling, a quantitative

survey as well as qualitative in-depth interviews and focus group discussions were conducted.

The questions and sub-questions for specific groups of participants targeting the objectives

were developed based on the community-based inclusive development matrix developed by

CBM UK. More details related to the framework of questions and sub-questions are provided

in Table -1.

Context:

The study was initiated during the COVID-19 pandemic and with the government-imposed

lockdown restrictions in place pan India. As this situation restricted active direct household

survey and face to face interviews, the study was carried out using alternate strategies such as

telephonic surveys and tele-interviews using Zoom/ Go-to meeting platforms.

Participants

a) Persons with disabilities

Inclusion Criteria-Persons with all disabilities were included in the study.

Exclusion criteria- severe co-morbidities, severe psychiatric illness, persons on

ventilator support, terminal illnesses etc.

b) NGO heads/ leaders/ programme managers working for persons with disabilities in

India.

c) Policy makers and government officials from the department of Social Justice and

Empowerment and Health and Family Welfare in India.

d) Caregivers of persons with disabilities

24

Table-1: Questions and Sub-Questions related to the objectives

Strategic Analysis of Impact of COVID 19 on CBID and Persons With Disability

Focus Themes List of Key areas for Questioning Stakeholders

1 Access

1.1 Information Accessing Public Health Information - Especially

Hand Hygiene, Social Distancing, Quarantine, Self-

Isolation

Persons with

disability,

Carers,

Project

managers,

Government

Authorities

1.2 Necessities Availability and Access to Food, Water, Medicines,

Stores, disinfection of assistive products and

environment, Transport, TV, internet.

1.3 Services Availability and Access to COVID 19 specific

services, General health services and Specific

rehabilitation services, Exacerbations due to

lockdown.

2 Participation

2.1 Work Engaging in paid / self-employment / Volunteer,

Work, Contingency plans, Furlough plans, Barriers

faced.

Persons with

disability,

Carers, DPOs

2.2 ADL Personal Care Needs, Management of Personal care,

Basic Protection Measures, Hand Hygiene Measures,

Contingency plans, Barriers faced.

2.3 Leisure Time / Stress Management, Ability to cope with the

situation.

2.4 Community

conversation

Engaging with friends, family and other social

groups of interest e.g. Religious activities, webinars,

meetings etc.

2.5 Contribution to

COVID 19

Activities

Media engagement, Preparing and publishing articles

in newspaper, journal, media etc. sharing good

practices and information

3 Communicati

on

3.1 Contacts/

staying

connected

Contacting Helpline, Friends and others for Social

support , Staying updated with latest information,

Access NEWS, Available Communication devices

and Facilities etc.

Persons with

disability,

Carers, DPOs,

Government

Authorities 3.2 Messages

accessible

Format and Content of the Messages, Sensitivity to

Culture and Context, Types of media used, Exclusive

Considerations for persons with disabilities

25

3.3 Authenticity /

Clarity

Sources of messages, Language, Clarity of the

messages, Quality of Translation and Interpretation

etc.

4 Networks

4.1 DPOs Awareness Raising, Contribution to support persons

with disabilities during lock down, Approaches and

Methods of Contribution, Contribution to COVID 19

activities

Persons with

disability,

DPOs,

Government

Authorities 4.2 Other

Community

groups

Awareness Raising, Contribution to support persons

with disabilities during lock down, Approaches and

Methods of Contribution, Contribution to COVID 19

activities

4.3 Support /

Exchange of

Good practice

Any Specific Contribution that can be translated to

other context, Innovations, Guidelines, Policies etc.

5 Compassion Compassion Compassion

5.1 Protect /

Promote Well

being

Inclusion and Considerations provided for Persons

with Disabilities in current COVID 19 / Lock down

plans, actions and policies.

Persons with

disability,

Carers,

Project

managers,

Government

Authorities

5.2 Encourage

Safety / Hope

Provision of Information, Communication,

Treatment, Screening/Testing, Access to Health and

Other Services during the pandemic

5.3 Social-

distancing /

Self Protection

Considerations especially for persons with

disabilities, Any innovative approaches, Exclusive

Guidelines for persons with disabilities

Figure-1: States where the study was conducted – Depicted in Yellow

26

Quantitative Methods:

Quantitative Survey: To achieve the objectives, a quantitative survey to assess the impact of

COVID-19 pandemic and the lock-down restrictions on persons with disabilities was carried

out.

Data collection tool: A structured survey tool was exclusively developed for the purpose of

the study based on the questions and framework for community based inclusive development

matrix provided in Table-1. The questions were developed by domain experts. Technical

feedback and suggestions from CBM and Handicap International were incorporated,

27

especially from people implementing disability programs in the field. The survey tool had

several questions categorized into specific sections within the assessment. The survey tool

was specific to persons with disabilities and their carers. The survey tool was translated in

Hindi for convenience. The survey tool used is provided under Annexure-2.

Online Training and Piloting: The survey tool was piloted before the data collection to

check for inaccuracies and was revised accordingly. The survey was conducted by five

trained interns of the master’s in public health program at the Indian Institute of Public

Health Hyderabad (IIPH-H). All the interns who were involved in the survey underwent a

formal training (in-person/online) on the survey methods and on the administration of the tool

before they actually started conducting the survey. As mentioned earlier, the survey was

telephonic, and informed consent was obtained and recorded from the participants before

they participated.

Sampling strategy: The sampling frame included Persons with disability from the areas

where CBM and its partner NGOs were implementing programs. CBM currently caters to the

needs of approximately 140,000 persons with disabilities across India through its partner

organizations. Since there is no precedence of impact of a pandemic to this scale, the level of

disruption (impact) was considered as the outcome.

Phase 1: The sample size was calculated based on the assumption that the level of disruption

was 50%, relative precision of 10% and non-response rate of 5%. The minimum number of

participants required for the quantitative survey was calculated to be 404. This assumption

was expected to ensure a sample size that is adequately powered to capture the required

information and generate robust evidence.

Phase 2: A minimum sample size of 100 participants was the target for the repeat survey

(25% of original sample). A stratified random sampling with near to equal distribution of

participants across each state was selected.

Data collection: The quantitative survey was carried out telephonically. The participants

were purposively selected for the quantitative survey with support from CBM India. As

already mentioned, five public health interns were trained for data collection. The data was

collected using the quantitative survey tool developed for the study. Verbal informed consent

was obtained, and the consent was audio recorded for each participant. Data collection

happened at two different points in time - once during the lockdown restriction and the other

28

was 6 weeks later, when the lockdown restrictions were eased partially in each of the study

sites.

Data Analysis: Descriptive analysis with frequencies / proportions was calculated for the

variables of interest within the quantitative survey in each of the domains of assessment. For

selected variables of interest, a comparative analysis was carried out using appropriate

statistical tests. Data from the lock-down phase of the quantitative survey was compared with

the post-lock down phase of the survey to understand the difference in proportion in two

different time points.

Qualitative Methods:

Data collection tool for Persons with Disability- A semi structured guide was exclusively

developed for the purpose of the study. The questions were developed by domain experts,

with feedback and suggestions from people implementing disability programs in the field.

Responses from the quantitative survey helped in identifying topics and issues that needed a

more in-depth understanding and additional insights and were noted as key aspects that

emerged from the survey. This helped shape the interview guide. The guide had a total of ten

domains categorized into specific sections within the assessment tool.

Data collection tool for key informants- Program managers, NGO workers and government

officials and policy makers in the field of disability was developed similarly.

In-depth Interviews and Focus Group Discussions: To gain in-depth insights related to the

answers provided in the quantitative survey, all the different types of participants: Program

managers, Administrators, Policy Makers and Government officials were either interviewed

in-depth or were involved in a participatory Focus Group Discussion (FGD) through zoom

calls. Separate topic guides were developed specifically for each type of participants and each

group of participants for the FGDs. An experienced Qualitative researcher conducted the in-

depth interviews and FGDs. The topic guides/ tools used for qualitative data collection are

provided as Annexure -3 &4.

29

Sampling for qualitative study component:

Participants were purposively identified for the purpose of the qualitative interviews and

FGDs. CBM, Humanity & Inclusion (HI) and their partners helped with participant selection,

and a snowballing approach was used for data collection.

Data collection: The qualitative In-depth interviews and FGDs were carried out

telephonically and using Zoom calls/ Go-To events platform respectively. An experienced

qualitative researcher collected the data using specific topic guides and discussion guides for

specific set of participants. Verbal consent was initially obtained to provide information and

with each participant accepting to participate in the study a written informed consent was

obtained from the participant with support from CBM partners in each of the states for the

qualitative interviews and FGDs. The interviews and FGDs were audio-recorded with consent

from participants.

Data Analysis: The Qualitative data was analysed using the Framework approach. The data-

audio was first transcribed verbatim into local language and then translated into English after

familiarization with the audio recording. Codes were then identified after reading first few

transcripts and then those codes were used as a template for other transcripts and new codes if

any were also identified. Codes were grouped into categories or themes. An in-depth analysis

was carried out for each of the themes and subthemes that emerged from the transcripts.

Ethics approval: This study was approved by the Institute Ethics Committee of the Indian

Institute of Public Health Hyderabad.

30

Results

Phase 1

The results are presented in two parts: During lockdown (lockdown: phase 1) and after easing

of the lockdown (post-lockdown: phase 2), with quantitative and qualitative results being

presented separately for each phase.

Part -1: Quantitative Results of Lockdown (Phase 1)

The main results for quantitative analysis are presented under the following sections:

characteristics of the study population, use of assistive devices followed by results on 6 key

domains including medical care, rehabilitation, mental health, education, livelihood, and

social empowerment.

Characteristics of the study population

A total of 403 participants were surveyed in the study. About half (50%) of the persons with

impairments were aged between 19 to 37 years and majority were males (60.3%). In terms of

type of impairments, 51.6% had physical impairments, 16.1% had visual impairments, 10.9%

had intellectual impairments and 9.2% had speech and hearing impairment. The distribution

of respondents who were married (n=141, 48.6%) and never-married (n=143, 49.3%) were

similar, with 89.4% (n=126) having children. Only 12.3% had formal employment. The

average disability pension received per month was INR 700 (US$ 9.4). Table 2 provides the

characteristics of the study population.

Table 2. Characteristics of the study population

Variables Categories N(%)

Age (years) 28(19,36.5)a

Sex Male 243(60.3%)

Female 160(39.7%)

Type of Impairment

Physical Impairment 208(51.6%)

Visual Impairment 65(16.1%)

Intellectual Impairment 44(10.9%)

Speech and Hearing Impairment 37(9.2%)

Multiple Impairment 37(9.2%)

Developmental Impairment 7(1.7%)

Mental Impairment 5(1.2%)

Occupation(n=397)

Self employed 121(30.5%)

Student/volunteer 94(23.7%)

Stays at home/Unemployed 82(20.7%)

Daily wage labour 51(12.8%)

Formal employed 49(12.3%)

Marital status Never married 143(49.3%)

31

Married 141(48.6%)

Divorced 3(1%)

Widowed 3(1%)

Number with children

(n=141)

126(89.4%)

Median Impairment

pension received per

month (rupees) 700(500, 1000)a

a Median (Interquartile range)

Distribution of type of Impairment with age

The median age of those with visual and physical Impairment were 31.5 and 31 years

respectively. Likewise, the median age of those with mental and intellectual Impairment were

26 and 20.5 years, respectively. Participants with development Impairment had median age of

19 years (Table 3).

Table 3. Age and type of Impairment

Type of Impairment Median Age

(Q1, Q3)

Visual 31.5(22,42)

Physical 31(22,39)

Mental 26(14,31)

Multiple 22(17,29)

Intellectual 20.5(15,28)

Speech and Hearing 20(12,30)

Developmental 19(18,35)

Q1: first quartile, Q3: Third Quartile

Distribution of participants across states

30% of the persons surveyed were from central part of India followed by eastern (20.8%) and

western region (17.4%). Out of the total 403 participants, 17.3% were from Maharashtra

followed by other states, less than 5% were from Meghalaya, Assam, Bihar, AP, Tamil Nadu,

Telangana, and Delhi. Table 4 provides distribution of persons across states. District wise

distribution has been provided in Annexure-5.

Table 4. Distribution of respondents across region and states

Regions N(%) States N(%)

Central 121(30%)

Chhattisgarh 35(28.9%)

Madhya Pradesh 36(29.8%)

Uttar Pradesh 50(41.3%)

East 84(20.8%) Bihar 16(19%)

Jharkhand 23(27.4%)

32

Odisha 45(53.6%)

North 59(14.6%) Delhi 6(10.2%)

Uttarakhand 53(89.8%)

North East 37(9.2%) Assam 18(48.6%)

Meghalaya 19(51.4%)

South 32(7.9%)

Andhra Pradesh 15(46.9%)

Tamil Nadu 9(28.1%)

Telangana 8(25%)

West 70(17.4%) Maharashtra 70(100%)

Assistive devices

About 35% of the respondents used assistive devices, of which the use of mobility devices

was the most common (61.2%). Majority (74.6%) sanitized their assistive device, most of

them at least thrice a day (87.6%). Water & soap, sanitizer, only water and cotton/ cloth were

commonly used to sanitize the assistive devices. Table 5 provides details on usage and

sanitization of assistive devices by the respondents.

Table 5. Usage and sanitization of assistive devices

Items Categories N(%)

Use of any assistive device

(n=400)

Yes 140(35%)

No 260(65%)

Type of assistive device using

currently (n=136)

Devices for Hearing

Impairments 17(12.5%)

Devices for Visual

Impairments 28(20.6%)

Mobility Devices 86(63.2%)

Hand Prosthesis 1(0.7%)

Multiple devices 4(2.9%)

Sanitizing the assistive device

(n=134) (6 participants have not responded)

Yes 100(74.6%)

No 34(25.4%)

Number of times sanitizing the

assistive device in a day (n=98) (1 participant did not respond)

≤ 3 times 86(87.8%)

> 3 times 12(12.2%)

Method used to sanitize the

assistive device (n=98)

Only water 20(20.2%)

Soap and Water 39(39.4%)

Sanitizer 22(22.2%)

Cotton/ Cloth 16(16.2%)

Any other Liquids/

Disinfectants 2(2%)

33

Sanitization of assistive devices across different disabilities

Majority of persons who reported sanitizing their assistive devices had physical impairment

(59%) followed by visual impairment (19%). Majority with physical impairment used soap

and water followed by only water, whereas persons with visual impairment mainly used

sanitizers to disinfect the assistive device.

Table 6. Sanitization of assistive devices across different impairments

Items Categories Developm

ental Intellectual Mental Multiple Physical

Speech and

Hearing Visual

Sanitizing the

assistive device

(n=134)

Yes

(n=100) 1(1%) 2(2%) 0(0%) 8(8%) 59(59%) 11(11%) 19(19%)

No

(n=34) 1(2.9%) 1(2.94%) 0(0%) 2(5.9%) 14(41.2%) 4(11.8%) 12(35.3%)

Number of times

sanitizing the

assistive device in a

day (n=98)

≤ 3 times

(n=86) 1(1.2%) 2(2.3%) 0(0%) 8(9.3%) 48(55.8%) 11(12.8%) 16(18.6%)

> 3 times (n=12)

0(0%) 0(0%) 0(0%) 0(0%) 9(75.0%) 0(0%) 3(25.0%)

Method used

to sanitize the

assistive device

(n=101)

Soap and

water

(n=39)

1(2.6%) 1(2.6%) (0.0%) 3(7.7%) 30(76.9%) 1(2.6%) 3(7.7%)

Sanitizer

(n=22) 0(0%) 1(4.5%) (0.0%) 1(4.5%) 12(54.5%) 1(4.5%) 7(31.8%)

Only Water (n=21)

0(0%) 0(0%) (0.0%) 1(4.8%) 14(66.7%) 2(9.5%) 4(19.0%)

Cotton or

Cloth

(n=16)

0(0%) 0(0%) 0(0%) 2(12.5%) 3(18.8%) 7(43.8%) 4(25.0%)

Any other

Liquids/

Disinfectant

(n=2)

0(0%) 0(0%) 0(0%) 1(50.0%) 0(0%) 0(0%) 1(50.0%)

Medical Care & Treatment

Majority of the persons with disabilities did not report of any pre-existing medical conditions

(87.3%). However, 42.5% reported that lockdown has made it difficult to get routine medical

treatment. Likewise, 53.5% said that continuous lockdown might affect their health in future

(Table 7). Out of 170 who had difficulty in accessing routine medical treatment, more than

half of them (59.4%) had physical impairment, followed by visual impairment (16.5%),

indicating that, persons with physical impairment were most affected in accessing the routine

medical treatment.

Table 7. Impact of lockdown on medical care & treatment

34


Persons with medical conditions

(n=403)

Yes 51(12.7%)

No 352(87.3%)

Lockdown has made it difficult to get routine

medical treatment

(n=400)

Yes 170(42.5%)

No 230(57.5%)

Continuous lockdown will affect the health in

future (n=402)

Yes 215(53.5%)

No 187(46.5%)

Impact of lockdown on Persons with disability with pre-existing medical conditions

12.7% (n=51) who reported pre-existing medical conditions, 58% reported difficulty in

getting routine medical treatment, 22% reported that they had difficulty getting their

medicines due to lockdown and nearly 70% thought that continuous lockdown will affect

their health in future (Table 8). Almost 28% reported that they had postponed regular

medical appointments because of lockdown as indicated in Table-8.

Table 8. Impact of lockdown on medical care & treatment among Persons with disability

with pre-existing medical conditions

Items Categories Medical Condition

Yes (n=51)

Lockdown has made it difficult to get routine

medical treatment (n=50)

Yes 29(58%)

No 21(42%)

Continuous lockdown will affect the health in

future (n=51)

Yes 35(68.6%)

No 16(31.4%)

Are you able to get the medicines you

regularly take? (n=41)

No 9(22%)

Yes 32(78%)

Has lockdown affected your health insurance

scheme? (n=10)

Yes 1(10.0%)

No 9(90.0%)

Are you getting the same kind of care now,

like before? (n=48)

Yes 32(66.7%)

No 16(33.3%)

Have you postponed regular medical

appointments because of lockdown? (n=51)

Yes 14(27.5%)

No 37(72.5%)

Have you postponed getting medical help

because of lockdown (n=51)

Yes 11(21.6%)

No 40(78.4%)

Access to out-patient services

About 35% (n=142) reported the need of out-patient services at hospitals/clinics during

lockdown (Table-9). Of the participants in need of the services, more than half (55.6%) had

difficulty in accessing the services. There were significant differences across occupations in

terms of access, unemployed persons had greater difficulty compared to students or employed

35

Persons with disability. There was no significant difference across age groups or gender

(Table-9).

Table 9. Impact of lockdown on access to out-patient services

Parameter

Number

reporting

need of the

service

Number

reporting

difficulty in

access (%)

Number

reporting no

difficulty in

access (%)

χ2

P value

Access to out-patient

services 142 79(55.6%) 63(44.4%) -

Gender

Females 61 38(62.3%) 23(37.7%) χ2 = 2.0

p value=0.17 Males 81 41(50.6%) 40(49.4%)

Age Group

≤40 years 124 69(55.6%) 55(44.4%) χ2 = 0.001

p value=0.99 >40 years 18 10(55.6%) 8(44.4%)

Occupational Category

Unemployed 22 17(77.3%) 5(22.7%) χ2 = 9.1

p value=0.01* Student 26 18(69.2%) 8(30.8%)

Employed 92 43(46.7%) 49(53.3%)

Type of Impairment

Mental 1 1(100.0%) 0(0.0%)

-

Developmental 3 3(100.0%) 0(0.0%)

Multiple 13 9(69.2%) 4(30.8%)

Visual 21 12(57.1%) 9(42.9%)

Speech and Hearing 11 6(54.5%) 5(45.5%)

Physical 76 41(53.9%) 35(46.1%)

Intellectual 17 7(41.2%) 10(58.8%)

Access to Emergency Medical Services

16.6% (n=67) reported the need of emergency medical services during lockdown (Table-10).

Of the people who needed the emergency services, nearly 45% had difficulty in accessing the

services required. There was no significant difference across age groups, gender or

occupations (Table-10).

Table 10. Impact of lockdown on access to emergency medical services

Parameter

Number

reporting

need

Number

reported

difficulty in

accessing (%)

Number

reported no

difficulty in

accessing

(%)

χ2

P value

Access to emergency

medical services 67 30(44.8%) 37(55.2%)

Gender

Males 33 14(42.4%) 19(57.6%) χ2 = 0.15

p value=0.70 Females 34 16(47.1%) 18(52.9%)

36

Age Group

≤40 years 60 29(48.3%) 31(51.7%) χ2 = 2.94

p value=0.08 >40 years 7 1(14.3%) 6(85.7%)


Student 11 5(45.5%) 6(54.5%) χ2 = 0.01

p value=0.99 Employed 48 21(43.8%) 27(56.2%)

Unemployed 7 3(42.9%) 4(57.1%)

Type of Impairment

Developmental 1 1(100.0%) 0(0.0%)

-

Intellectual 12 8(66.7%) 4(33.3%)


Physical 33 14(42.4%) 19(57.6%)

Multiple 5 2(40.0%) 3(60.0%)

Visual 11 2(18.2%) 9(81.8%)

Mental 0 0(0.0%) 0(0.0%)

Access to Medicines

35.7% (n=144) reported the need of accessing medicines during lockdown (Table-11). Of the

people who were in need, about 46% had difficulty in getting the medicines. There was no

significant difference across age groups or gender or occupations (Table-11).

Table 11. Impact of lockdown on accessing medicines

Parameter

Number

reporting

need

Number

reported

difficulty in

accessing (%)

Number

reported no

difficulty in

accessing (%)

χ2

P value

Access to Medicines 144 67(46.5%) 77(53.5%)

Gender

Females 66 31(47.0%) 35(53.0%) χ2 = 0.009

p value=0.92 Males 78 36(46.2%) 42(53.8%)

Age Group

≤40 years 116 54(46.6%) 62(53.4%) χ2 =0.02

p value=0.88 >40 years 27 13(48.1%) 14(51.9%)


Unemployed 17 10(58.8%) 7(41.2%) χ2 = 1.28

p value=0.58 Employed 94 43(45.7%) 51(54.3%)

Student 33 14(42.4%) 19(57.6%)

Type of Impairment

Mental 2 2(100.0%) 0(0.0%)

-

Multiple 1 1(100.0%) 0(0.0%)

Physical 14 8(57.1%) 6(42.9%)

Visual 15 7(46.7%) 8(53.3%)

Intellectual 22 10(45.5%) 12(54.5%)


Developmental 21 9(42.9%) 12(57.1%)

37

About 12 participants reported the need for accessing regular blood pressure monitoring. Of

those, 58% (n=7) reported difficulty in accessing it, with two-thirds of them being male

(Table 12)

Table 12. Impact of lockdown on access to blood pressure monitoring

Parameter

Number

reporting

need

Number

reported

difficulty in

accessing (%)

Number

reported no

difficulty in

accessing

(%)

Need for accessing regular

blood pressure monitoring 12 7(58.3%) 5(41.7%)

Gender

Males 9 6(66.7%) 3(33.3%)

Females 3 1(33.3%) 2(66.7%)

Age Group

≤40 years 6 4(66.7%) 2(33.3%)

>40 years 6 3(50.0%) 3(50.0%)


Unemployed 1 1(100.0%) 0(0.0%)

Employed 8 5(62.5%) 3(37.5%)

Student 3 1(33.3%) 2(66.7%)

Type of Impairment

Visual 1 1(100.0%) 0(0.0%)

Physical 1 1(100.0%) 0(0.0%)

Speech and 6 4(66.7%) 2(33.3%)

Intellectual 3 1(33.3%) 2(66.7%)

Mental 0 0(0.0%) 0(0.0%)

Developmental 1 0(0.0%) 1(100.0%)

Multiple 0 0(0.0%) 0(0.0%)

About 14 participates reported the need for accessing regular diabetes monitoring, a majority

of them being male. About 35% had difficulty accessing it (n=5) (Table 13)

Table 13. Impact of lockdown on access to regular diabetes monitoring

Parameter

Number

reporting

need

Number reported

difficulty in

accessing (%)

Number reported

no difficulty in

accessing (%)

Need for accessing regular

diabetes monitoring 14 5(35.7%) 9(64.3%)

Gender

Males 11 5(45.5%) 6(54.5%)

Females 3 0(0.0%) 3(100.0%)

38

Age Group

≤40 years 10 2(20.0%) 8(80.0%)

>40 years 4 3(75.0%) 1(25.0%)


Employed 10 2(20.0%) 8(80.0%)

Student 4 3(75.0%) 1(25.0%)

Unemployed 0 0(0.0%) 0(0.0%)

Type of Impairment

Intellectual 4 2(50.0%) 2(50.0%)

Developmental 3 1(33.3%) 2(66.7%)


Visual 0 0(0.0%) 0(0.0%)

Multiple 0 0(0.0%) 0(0.0%)

Physical 0 0(0.0%) 0(0.0%)

Mental 0 0(0.0%) 0(0.0%)

Sample size too small to perform test

About 21 participants reported a need for accessing surgical procedure and a majority of them

were employed. Almost half of them (n=10) reported difficulty in accessing it. (Table 14)

Table 14. Impact of lockdown on access to surgical procedures

Parameter

Number

reporting

need

Number reported

difficulty in

accessing (%)

Number

reported no

difficulty in

accessing (%)

Need for accessing

Surgical procedure 21 10(47.6%) 11(52.4%)

Gender

Males 11 6(54.5%) 5(45.5%)

Females 10 4(40.0%) 6(60.0%)

Age Group

≤40 years 18 8(44.4%) 10(55.6%)

>40 years 3 2(66.7%) 1(33.3%)


Employed 17 7(41.2%) 10(58.8%)

Unemployed 1 1(100.0%) 0(0.0%)

Student 3 2(66.7%) 1(33.3%)

Type of Impairment

Mental 0 0(0.0%) 0(0.0%)

Developmental 1 0(0.0%) 1(100.0%)

Multiple 0 0(0.0%) 0(0.0%)

Visual 2 1(50.0%) 1(50.0%)


Physical 1 0(0.0%) 1(100.0%)

Intellectual 2 1(50.0%) 1(50.0%)

39

Access to Rehabilitation services

About 17% (n=69) reported the need of rehabilitation services (Table-15). Of the people who

were in need, majority (59.4%) had difficulty in accessing the required services. There was

no significant difference across age groups or gender or occupations (Table-15).

Table 15. Impact of lockdown on rehabilitation services

Parameter

Number

reporting

need

Number

reported

difficulty in

accessing (%)

Number

reported no

difficulty in

accessing (%)

χ2

P value

Need for accessing

Rehabilitation services 69 41(59.4%) 28(40.6%)

Gender

Males 41 22(53.7%) 19(46.3%) χ2 =1.39

p value=0.24 Females 28 19(67.9%) 9(32.1%)

Age Group

≤40 years 63 38(60.3%) 25(39.7%) χ2 =2E-04

p value=0.99 >40 years 5 3(60.0%) 2(40.0%)


Employed 44 25(56.8%) 19(43.2%) χ2 = 0.64

p value=0.72 Unemployed 12 7(58.3%) 5(41.7%)

Student 13 9(69.2%) 4(30.8%)

Type of Impairment

Mental 1 1(100.0%) 0(0.0%)

-

Developmental 8 1(12.5%) 7(87.5%)

Multiple 0 0(0.0%) 0(0.0%)

Visual 12 8(66.7%) 4(33.3%)


Physical 4 3(75.0%) 1(25.0%)

Intellectual 4 2(50.0%) 2(50.0%)

Table-16 shows results on the impact of lockdown on rehabilitation services and therapy

support services. About 82(20.3%) participants reported of receiving rehabilitation and

therapy services during lockdown. Most of them received physiotherapy (69.5%) followed by

speech therapy. Most (70.7%) Persons with disability opine that the government has not

given any special considerations to Persons with disability during the lock down, especially

in terms of access to vital information, rehabilitation /therapy support services.

40

Table 16 Impact of lockdown on rehabilitation services and therapy

Which of the following therapies do

you receive?

(n=82)

Physio 57(69.5%)

Speech 13(15.9%)

Others 6(7.3%)

More than one 7(7.3%)

Has the government given any special

considerations to Persons with

disability during the lock down,

especially in terms of access to vital

information, rehab/therapy support

services?

Yes 118(29.3%)

No 285(70.7%)

Mental Health

The psychological reactions to COVID-19 pandemic may vary from fear and anxiety, panic,

feelings of hopelessness to depression. In addition, people may face problems in family

relationships, discrimination, violence, etc., In the present study, the psychological impact of

COVID-19 was measured and has been described in 3 sections: (a) Impact on Mental health

& well-being of Persons with disability, (b) Access to Mental health services and (c)

Psychological impact on caregivers

a) Impact on Mental health & well-being of Persons with disability

We asked participants what was bothering them the most during the lockdown. Fear of

infection (69%) and loss of income (65.4%) was most commonly reported fear followed by,

fear of infecting others (59.6%), fear of dying (50%), lack of support (45.5%), gender-based

violence (5.7%), and interruption of care giver (8%). Table 17-19 displays impact of

lockdown on participants’ mental health.

Table 17. Impact of lockdown on participants’ mental health

Items Not at all Moderately A lot

Fear of Infection(n=403) 125(31%) 195(48.4%) 83(20.6%)

Fear of infecting others(n=403) 163(40.4%) 220(54.6%) 20(5%)

Fear of dying (n=402) 201(50%) 186(46.3%) 15(3.7%)

Lack of support (n=403) 220(54.6%) 161(40%) 22(5.5%)

Gender based violence (n=401) 378(94.3%) 15(3.7%) 8(2%)

Loss of income (n=401) 139(34.7%) 142(35.4%) 120(29.9%)

We also measured the level of stress and anxiety among the participants. 81.6% participants

experienced moderate to high level of stress. 71.1% experienced moderate to high levels of

41

anxiety, 74.4% felt overwhelmed with the situation and 72.4% had feelings of uncertainty

about future.

Table 18. Level of stress & anxiety since the COVID-19 outbreak

Items Not at all Moderately A lot

Stressed 74(18.4%) 235(58.5%) 93(23.1%)

Overwhelmed 103(25.8%) 259(64.8%) 38(9.5%)

Anxious 116(28.9%) 236(58.9%) 49(12.2%)

Uncertain 111(27.7%) 227(56.6%) 63(15.7%)

Weighted mean score

The weighted average score was obtained for each 3-point Likert scale item related to mental

health. The Likert scale was weighted as not at all =1, moderately=2 and a lot=3. The

weighted mean score was defined as ∑ (𝑁𝑢𝑚𝑏𝑒𝑟 𝑜𝑓 𝑟𝑒𝑠𝑝𝑜𝑛𝑠𝑒×𝑤𝑒𝑖𝑔ℎ𝑡)3

𝑖=1

𝑇𝑜𝑡𝑎𝑙 𝑛𝑢𝑚𝑏𝑒𝑟 𝑜𝑓 𝑟𝑒𝑠𝑝𝑜𝑛𝑠𝑒𝑠.

Overall, loss of income and feeling stressed was most highly rated (rank-1) with a weighted

mean score of 2. This was followed by uncertainty about future and fear of infection of the

virus (Table 19).

Table 19. Weighted average score of the items related to mental health

Items Not at all

(1)

Moderately

(2)

A lot

(3)

Number of

responses

Weighted

mean Rank

Loss of income 139 142 120 401 2.0 1

Stressed 74 235 94 403 2.0 1

Fear of Infection 125 195 83 403 1.9 2

Uncertain 111 227 64 402 1.9 2

Overwhelmed 103 259 40 402 1.8 3

Anxious 116 236 50 402 1.8 3

Fear of infecting others 163 220 20 403 1.6 4

Fear of dying 201 186 15 402 1.5 5

Lack of support 220 161 22 403 1.5 5

Gender based violence 378 15 8 401 1.1 6

Interruption of care

giver 325 22 6 353 1.1 6

Table- 20 & 21 indicates the association of demographic factors with mental health

components. There was significant difference across age groups (≤40 years’ vs >40 years)

and occupation (employed vs unemployed vs student) in relation to fear of infection, fear of

infecting others, feelings of stress, overwhelmed and uncertainty about future. We found no

significant gender difference across different mental health questions.

42

Tab

le 2

0. A

sso

ciat

ion o

f dem

ogra

ph

ic f

acto

rs w

ith f

ear,

str

ess,

and a

nx

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r

of

dyin

g

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k o

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support

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der

bas

ed

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lence

Loss

of

inco

me

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rrup

tion

of

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nx

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rtai

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der

0

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0.7

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9

0.0

8

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6

0.5

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up

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9

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pati

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gory

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t; *

stati

stic

all

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gnif

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lev

el o

f si

gnif

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nce

Tab

le 2

1. A

ssoci

atio

n o

f dem

ogra

phic

fac

tors

wit

h p

arti

cip

ant’

s m

enta

l h

ealt

h

Dem

ogra

phic

fact

ors

Pro

ble

ms

in

rela

tionsh

ip

Chan

ge

in f

amil

y

dynam

ic

s

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donm

ent

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tion

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tigm

a V

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nce

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iscr

imin

atio

n

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der

F

0.5

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0.0

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0.3

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0.2

4

0.1

2

0.9

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0.1

1

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Gro

up

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0.7

2

0.8

3

0.7

2

0.6

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0.6

9

0.3

6

0.0

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up

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on

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gory

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4

0.7

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e of

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air

men

t F

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f si

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icance

43

Table -22 depicts psychosocial problems faced by Persons with disability since the covid-19

outbreak. 22.3% faced stigma and 13.2% experienced discrimination, 13.4% had changes in

family dynamics, problems in relationships (5%), isolation (4.7%), abandonment (3%) and

violence (1.7%).

Table 22. Psychosocial problems faced by Persons with disability since the COVID-19

outbreak

Items Yes

N(%)

No

N(%)

Problems in relationship(n=402) 20(5%) 382(94.8%)

Change in family dynamics(n=400) 54(13.5%) 346(86.5%)

Abandonment 12(3%) 389(96.8%)

Isolation 19(4.7%) 383(95.3%)

Stigma 90(22.4%) 312(77.6%)

Violence 7(1.7%) 395(98.3%)

Discrimination 53(13.2%) 349(86.8%)

b) Access to Mental health services and emotional support

Majority (65.5%) did not need the access to information related to mental health & care,

psychological or emotional support and services. Among the ones who needed, only

25.9% had access to any kind of mental health services. Among 103 who did not have

access, 61.2% were males, 91.3% were less than 40 years old and majority (52.4%) had

physical impairment. Only 20% were able to get regular mental health counselling or

therapy related services during the COVID-19 lockdown. Among 44 persons who did not

get regular mental health services, 65.9% were males, 95.5% were less than 40 years, and

47.7% had physical impairment.11.4% faced problems getting their regular psychiatric

medicines. Most participants reported that they are getting emotional and practical

support from family (94.9%),1.8% from friends and 2.5% from multiple sources Table 23

provides details on the access mental health services and emotional support.

Table 23 Access to mental health services and emotional support

Items Categories F (%)

N=403

Do you have access to information

related to mental health & care,

psychological or emotional support and

services? Ex: Mental health helpline,

online counselling, stress management

tips etc.) (n=139)

Number reporting need 139(34.5%)

Number reported have

access 36(25.9%)

Number reported did not

have access 103(74.1%)

Have you been able to get regular mental

health counselling or therapy related

Number reporting need 55 (13.6%)

Number reported accessed 11(20%)

44

services during the COVID-19 outbreak?

(n=110)


access 44 (80%)

Did you face any problem for getting

your regular psychiatric medicine if

prescription date was old and you cannot

get recent prescription?

Number reporting need 35(8.7%)

Number reported faced

problem 4(11.4%)


face problem 31(88.6%)

From whom are you getting emotional or

practical support from family and friends

during COVID-19 outbreak?

Number reporting need 395(98%)

Only family 375(93.1%)

Only friends 7(1.7%)

Family, friends, and

colleagues 10(2.5%)

Family and ASHA 2(0.5%)

Others 1(0.2%)

c) Psychosocial impact on caregivers

Table 24 displays the results related to mental health of caregivers. As a caregiver/parent,

49.5% were getting enough professional support like earlier during the lockdown. 55. 7% felt

moderately stressed caring for children or other family members at home with Impairment,

21.9% reported higher level of stress in taking care of persons with disabilities 58.2% felt

unhappy that the therapy for their child had to be stopped during lockdown.

Table 24 Mental Health Impact of COVID-19 on caregivers


As a caregiver/parent, are you getting

enough professional support like earlier

during this covid19 outbreak? (n=91)

Yes 45(49.5%)

No 46(50.5%)

As a caregiver, are you feeling stressed,

anxious, or depressed with caring for

children or other family members at home

with Impairment? (n=228)

Not at all 51(22.4%)

Moderately 127(55.7%)

A lot 50(21.9%)

As a parent or caregiver, did you feel

unhappy when the therapy for your child

had to be stopped during lockdown?

(n=134)

Not at all 56(41.8%)

Moderately 63(47.0%)

A lot 15(11.2%)

Activities for Daily Living

During the lockdown, the family was a pillar of support and assistance especially for daily

activities. Out of the total 403, 329(81.6%) needed assistance in daily activities, most of

them supported by their family members (95.1%). More than half (55.8%) perceived that

45

they will be capable of managing themselves in case of another lockdown. Table 25 indicates

the impact of lockdown on daily activities.

Table 25. Impact of lockdown on Activities of daily living

Items Categories F (%)

(N=403)

The number of people reporting that

they were helped in daily activities 329 (81.6%)

Who helped you in your daily

activities (n=329)

ASHA 7(2.1%)

Paid caregiver 2(0.6%)

Volunteer 4(1.2%)

Family 313(95.1%)

Others 3(0.9%)

Do you think that you will be capable

of managing yourself in case of

another lockdown?

Yes 225(55.8%)

No 99(24.6%)

Not sure 74(18.4%)

Livelihood

Majority (84.2%, N=320) of the participants mentioned that lockdown impacted their daily

activities pertaining to livelihood. 57.1%. respondents reported that the supply chain of

material that they had developed was affected due to lockdown. 60.3% of participants

reported that the supply of farm inputs like seeds, fertilizer, and pesticides were impacted.

51.1% of participants had no difficulty in getting the required updates for their business (such

as price, suppliers’ information). 76.2% of participants reported that lack of transportation

affected the movement of input and output supply due to lockdown. (Table 26).

Table 26. Impact of lockdown on livelihood (supply chain, farm inputs, transportation,

updates)

Items Yes N(%) No N(%)

Has the lockdown impacted your daily

activities pertain to livelihood? (n=380) 320(84.2%) 60(15.8%)

Supply chain of material that you have

developed (n=70) 40(57.1%) 30(42.9%)

supply of farm inputs like seeds, fertilizer,

and Pesticides? (n=58) 35(60.3%) 23(39.7%)

transportation of input and output supply due

to lack of transportation? (n=101) 77(76.2%) 24(23.8%)

facility of water supply (n=102) 35(34.3%) 67(65.7%)

Are you getting updates that you require for

your business ( such as price, suppliers) 46(48.9%) 48(51.1%)

46

(n=94)

Are you able to sell your produce/products?

(n=93) 48(51.6%) 45(48.4%)

The lockdown affected the pensions / remittance among 33.1%. Around 45.7% were

borrowing money because of lockdown, mainly for livelihood (65.2%). The main method by

which they were coping with the financial crisis situation was through borrowing food/

money from relatives/ friends/ neighbours. Only 9.2% of participants thought they will accept

any job for low pay because of poor income after lockdown ends. Only 18.2% thought

loan/funds were available with inclusive cooperatives (Table 27)

Table 27. Impact of lockdown on livelihood (pensions, wages, loans)


Has the lockdown affected the Pensions /

Remittance? (n=284)

Yes 94(33.1%)

No 190(66.9%)

Are you getting your full wages / pay during

lockdown situation? (n=172)

Yes 58(33.7%)

No 114(66.3%)

Are you borrowing money because of

lockdown? (n=396)

Yes 181(45.7%)

No 215(54.3%)

For what? (n=181)

Children studies 6(3.3%)

Farming 7(3.9%)

Ladies group 2(1.1%)

Livelihood 118(65.2%)

Medicines 17(9.4%)

Business 31(17.1%)

Do you think you will accept any job for low

pay because of poor income after lockdown

ends? (n=87)

Yes 8(9.2%)

No 79(90.8%)

Are loan/funds available with inclusive

Cooperatives? (n=22)

Yes 4(18.2%)

No 18(81.8%)

How are you (person with Impairment) coping

with the financial crisis situation? (n=157)

reducing size/ no. of

meals eaten/ 8(5.1%)

changing diet to

cheaper/ less-

preferred foods

11(7.0%)

selling off some

household

possessions and/or

livestock

5(3.2%)

borrowing food/

money from

relatives/ friends/

neighbors

133(84.7%)

47

Education

73.3% of the respondents (parents only) felt that on being confined to home the children felt

distressed. 70.5% said that schools being shut down, has affected the child learning. 65.9% of

the schools are not providing online teaching to children. Among the ones who received

online teaching only 9.3% said that the teaching was not in accessible formats (Table 28).

Among four who reported that the online teaching was not in accessible format, two had

speech and hearing impairment, one each had development and physical impairment.

Table 28. Impact of lockdown on Education

Items Yes N(%) No N(%)

On being confined to the home, did the

children feel distressed? (n=165) 121(73.3%) 44(26.7%)

Since all schools are closed, has it affected the

child learning? (n=132) 93(70.5%) 39(29.5%)

Is the school providing online teaching to

children? (n=126) 43(34.1%) 83(65.9%)

If yes, is it in accessible formats? (n=43)

Missing data=1 38(88.4%) 4(9.3%)

Social participation and empowerment

Lockdown seems to have impacted participation in social empowerment activities: 54.2%

said it impacted work as PRI members, 52.9% agreed that it impacted village relief work and

74.6% said it impacted working as a DPO member (Table 29).

Table 29. Impact of lockdown on participants’ social empowerment


Has lockdown affected your participation in the following

a) Panchayat Raj Institution (PRIs) as

Members? (n=190)

Yes 103(54.2%)

No 87(45.8%)

b) Village relief work? (n=221)

Yes 117(52.9%)

No 104(47.1%)

Cannot Answer 180(44.8%)

c) Social mobilization with other

community members for

community issues? (n=217)

Yes 129(59.4%)

No 88(40.6%)

d) Participation in village level

COVID response and planning?

(n=215)

Yes 117(54.4%)

No 98(45.6%)

e) Disabled people organization (DPO) Yes 197(74.6%)

48

meetings (n=264) No 67(25.4%)

f) Do you feel that after lockdown,

working with community and PRIs

will change? (n=269)

Yes 199(74.0%)

No 70(26.0%)

Impact of lockdown among Persons with disability in different areas of health

The lockdown had impact more than 80% of the persons with impairment in terms of medical

(81.4%), rehabilitation (88.6%), mental health (86.4%), education and livelihood (86.1%).

However only 52.3% of the persons were impacted in the areas of Social empowerment

(Table 30).

Table 30 Distribution of percentage of impact of lockdown among Persons with disability in

each domain

IMPACT

Domains Yes

N(%)

No

N(%)

Medical a 328(81.4%) 75(18.6%)

Rehabilitation b 357(88.6%) 46(11.4%)

Mental health c 348(86.4%) 55(13.6%)

Education and Livelihood d 347(86.1%) 56(13.9%)

Social Empowerment e 193(52.3%) 176(47.7%) a:answered ‘yes’ to any 3 out of 14 questions

b: answered ‘yes’ to any one out of 4 questions

c: answered ‘yes’ to any 4 out of 24 questions d: answered ‘yes’ to any 3 out of 15 questions

e: answered ‘yes’ to any 2 out of 6 questions

Association of demographic factors with impact of lockdown

Age in years (below 40/above 40), sex (male/female), type of impairment (developmental,

intellectual/mental/physical/speech and hearing/visual), occupation (employed/unemployed

/student), marital status (married/never married), having children (yes/no) and receiving

pension (yes/ no) were the factors considered for the analysis. There was a statistically

significant association with ‘type of impairment’ with rehabilitation (p value=0.005) and

‘impact on social empowerment’ (p value=0.03). Lockdown had an impact on 91.9% of

persons with visual impairment, similarly, among the ones who had speech and hearing

impairment (92.3%). Likewise, among persons with multiple impairment, 62.9% were

impacted because of lockdown.

There was a statistically significant association with type of occupation with impact on

medical care & treatment (p value=0.003), mental health (p value=0.005) and social

49

empowerment (p value<0.001). Majority (86.4%) of the employed were impacted in terms of

access to medical facilities followed by those who were unemployed (79.8%) and students

(70.2%). Among persons having children, 86.8% reported to have been affected mentally

compared to 73.8% who did not have children. The impact in terms of social empowerment,

rehabilitation, mental health, education and livelihood was more. Table 31 provides the

association of factors with impact of lockdown.

50

Tab

le 3

1:

Fac

tors

ass

oci

ated

wit

h i

mpac

t of

lock

dow

n

Vari

ab

les

Cate

gori

es

IMP

AC

T

Med

ical

P

valu

e R

ehab

ilit

ati

on

P

valu

e

Men

tal

hea

lth

P

Valu

e

Ed

uca

tion

an

d

Liv

elih

ood

P

Valu

e

Soci

al

Em

pow

erm

ent

P

valu

e

Yes

Yes

Yes

Yes

Y

es

Age

(yea

rs)

<40

323(8

1.8

%)

0.3

1 F

351(8

8.9

%)

0.1

4

F

342(8

6.6

%)

0.1

9 F

3

41

(86

.3%

) 0.2

0 F

1

90

(52

.5%

) 0.6

8 F

≥40

4(6

6.7

%)

4(6

6.7

%)

4(6

6.7

%)

4(6

6.7

%)

2(4

0.0

%)

Sex

M

ale

203(8

3.5

%)

0.1

7

214(8

8.1

%)

0.6

7

207(8

5.2

%)

0.4

0

214(8

8.1

%)

0.1

6

111(5

0.0

%)

0.2

8

Fem

ale

125(7

8.1

%)

143(8

9.4

%)

141(8

8.1

%)

133(8

3.1

%)

82(5

5.8

%)

Typ

e of

imp

air

men

t

Dev

elop

men

tal

7(1

00.0

%)

0.0

5 F

4(5

7.1

%)

0.0

05

F

5(7

1.4

%)

0.6

4 F

6(8

5.7

%)

0.2

4 F

2(3

3.3

%)

0.0

3 F

Inte

llec

tual

28(6

3.6

%)

32(7

2.7

%)

35(7

9.5

%)

33(7

5.0

%)

22(6

2.9

%)

Men

tal

4(8

0.0

%)

4(8

0.0

%)

5(1

00.0

%)

5(1

00.0

%)

0(0

.0%

)

Mu

ltip

le

176(8

4.6

%)

189(9

0.9

%)

180(8

6.5

%)

180(8

6.5

%)

110(5

6.1

%)

Ph

ysi

cal

31(8

3.8

%)

34(9

1.9

%)

33(8

9.2

%)

34

(91

.9%

) 1

3(3

8.2

%)

Sp

eech

an

d

Hea

rin

g

54(8

3.1

%)

60(9

2.3

%)

57(8

7.7

%)

59(9

0.8

%)

26(4

2.6

%)

Vis

ual

28(7

5.7

%)

34(9

1.9

%)

33(8

9.2

%)

30(8

1.1

%)

20(6

0.6

%)

Occ

up

ati

on

Em

plo

yed

191(8

6.4

%)

0.0

03

F

203(9

1.9

%)

0.0

5

202(9

1.4

%)

0.0

05

188(8

5.1

%)

0.7

5

131(6

0.9

%)

<0.0

01

Un

em

plo

yed

67(7

9.8

%)

72(8

5.7

%)

67(7

9.8

%)

72(8

5.7

%)

33(4

4.6

%)

Stu

den

t 66(7

0.2

%)

78(8

3.0

%)

76(8

0.9

%)

83(8

8.3

%)

27(3

5.5

%)

Mari

tal

statu

s

Marr

ied

122(8

5.9

%)

0.0

8

131(9

2.3

%)

0.0

8

125(8

8.0

%)

0.4

5

126(8

8.7

%)

0.2

5

65(4

7.8

%)

0.2

1

Nev

er m

arr

ied

204(7

8.8

%)

226(8

6.6

%)

223(8

5.4

%)

221(8

4.7

%)

125(5

4.3

%)

Ha

vin

g

chil

dre

n

Yes

114(8

3.8

%)

0.0

07

123(9

0.4

%)

0.0

01

118(8

6.8

%)

0.0

01

11

9(8

7.5

%)

0.7

3

58

(45

.7%

) 0.5

1

No

85(6

9.7

%)

91(7

4.6

%)

90(7

3.8

%)

105(8

6.1

%)

40(4

1.2

%)

Rec

eivin

g

pen

sion

No

214(8

3.9

%)

0.0

9

231(9

0.6

%)

0.0

3

F

228(8

9.4

%)

0.6

0

223(8

7.5

%)

0.0

4

139(5

6.7

%)

0.0

06

Yes

43(9

3.5

%)

46(1

00.0

%)

43(9

3.5

%)

35(7

6.1

%)

36(7

8.3

%)

F:

Fis

her

s ex

act

tes

t

Note

: C

hi

squ

are

tes

t w

as

per

form

ed. F

requen

cy w

ith r

ow

per

centa

ge

is r

eport

ed

51

Part -2: Qualitative Results - Lockdown Phase

In-depth interview (IDIs) and focus group discussions (FGDs) recordings were transcribed,

and transcripts were analysed. The analysis approach was deductive, the thematic analysis

was conducted according to ten pre-set coding categories/themes (difficulties in daily life,

access, services, participation, communication, compassion, networks, finances, government

response and positive impact). Table-32 depicts the profile of the respondents.

Table 32. Profile of In-depth Interviewees and Focus Group Discussion Respondents

IDIs FGDs* Total

Number of IDIs & FGDs 11 4 15

Total Number of participants 11 16 27

Sex Male 9 13 22

Female 2 3 5

Age 20-40 years 3 8 11

41-60 years 8 8 16

Sector

Government Official 3 2 5

Program Managers/ Advisor/NGO-

In charge

5 8 13

Persons with disabilities 3 - 3

Carers - 6 6

*Total 4 FGDs, 2 FGDs during lockdown period and 2FGDs after lockdown was eased.

The qualitative results are presented theme wise, mainly in the form of quotes from various

participants and a brief summary has been provided for each of the themes.

52

THEME-1: Difficulties in daily life and management describes problems faced by Persons

with disability during lockdown, it includes personal care needs and management, basic

protection measures such as hand hygiene and the barriers they faced, psychological impact,

discrimination, abandonment and fear of infection. Stakeholders described that COVID-19

itself has not caused much impact as much as the lockdown has on people’s lives. With

regard to basic protection measures, the findings indicated that it would take time for people

to follow distancing and hand hygiene measures. Lockdown has negative psychological

impact on Persons with disability and one of the most common reason is economic difficulty.

THEME-1: DIFFICULTIES IN DAILY LIFE & MANAGEMENT

Personal Care Needs and Management

“For people with VI, they need support of handrails, people, they can get infected

easily because of touching people and surfaces” (Program Manager, Female)

“COVID itself hasn’t caused much impact to them as much as the lockdown has”

(ASHA, PRI Member & Caregiver, Female)

“Persons with disability’s biggest challenge is that they are in need of help!”

(Program Lead, Male)

“It is a gradual journey for such Persons with disability to become self-dependent.

Their livelihood got affected very seriously due to lockdown. Due to this situation,

they began losing hope and motivation which was gained after years of hard work”.

(NGO in-charge, Male)

Basic Protection Measures, Hand Hygiene Measures, Barriers faced

“People may want to help persons with VI, but now they are scared even to give a

hand”. (Program Manager, Female)

“I ask them to wash the hands but not everyone pays heed. Only few of them wash

their hands for 20 seconds. When I ask them to wear the masks, they don’t listen,

saying that nothing happens to us, it’s a disease in another country, when time

comes everyone has to die!” (ASHA, PRI Member & Caregiver, Female)

“These practices take a longer time, and we can’t teach them about these things in

10 days” (Program Lead, Male)

“When there was pollution, we were supposed to wear mask but now when the air

is pure, we are using masks”. (Govt Official, Male)

“Our children are prone to infection and their immunity is less. We ensured that

children are away from the elderly”. (Caregiver, NGO In-charge, Male)

Psychological impact

“It has critical negative psychological impact on them” (Govt Official, Male)

“Misery has added more to the miserable” (ASHA, PRI Member& Caregiver,

53

Female)

“People who came out of this stigma with lots of effort and motivation are suddenly

demotivated again”. (NGO in-charge, Male)

“They are psychologically disturbed as stored ration gets consumed. If we have

food security and cash for 1 year, we can maintain our mental health in these

difficult conditions”. (NGO in-charge, Male)

Discrimination/Violence

“Persons with disability are asked to stay at home, in one corner, within the four

walls”. (Program Manager, Female)

“When some persons with disabilities were going to the district headquarters to

buy medicines, on the way they were stopped by the police and they were beaten

up”. (Program Officer, Male)

“Parents are not able to make enough money, they get irritated, they fight among

themselves and take their anger on disabled children”. (Senior Advisor, NGO,

Male)

If in a house if I have a child with disability, I abuse that child, who will report?

(Senior Advisor, NGO, Male)

Abandonment

Many who are in institutional facilities, were abandoned and their parents do not

want to take them. (Senior Advisor, NGO, Male)

Fear of infection

“We go to the market to buy vegetables and feed our kids, but we get to know

through the information, that corona is spreading through vegetables as well as

tomatoes”. (ASHA, PRI Member & Caregiver, Female)

“And If I go to the vegetable vendor, I feel afraid if he has COVID-19? Because

vegetables come through 10 places, we are unable to buy vegetables. So, these are

difficulties faced relating to food”. (ASHA, PRI Member& Caregiver, Female)

“Hospitals for general health are a very dangerous place for Persons with disability,

and they may get affected with COVID-19” (Govt Official, Male)

THEME-2: ACCESS and availability to basic necessities such as food & water, medicines,

stores, disinfection of assistive products, TV/internet; Access to information, transport, and

other alternative arrangements. Findings from interviews indicated that many faced

difficulties in accessing basic necessities such as food mainly vegetables and pulses whereas

rice was provided by the government. Access to medicines was difficult mainly due to travel

restrictions in the region. Regarding access to information, most of the information was not

available in an accessible format and the reasons for hand washing or maintaining distance

were not clear through the informational messages.

54

THEME-2: ACCESS

Basic Necessities: Availability and Access to Food & Water

“I have not eaten food for 8 days, the persons with disabilities told me” (ASHA,

PRI Member & Caregiver, Female)

“My husband has been at home for the past 4months and we are managing

somehow. We have a small shop; we earn Rs. 100-250 a day and that is being used

for groceries and food. If someone is sick how can they borrow pulses, rice from

someone and make their livelihood? Last time we got 25kgs of rice, 5 kg/person.

But only rice would not suffice our needs” (ASHA, PRI Member& Caregiver,

Female)

“Government system should understand that rice and wheat flour is not enough as

there is no fuel to cook. Villages are managing with help of wood. With empty

cylinders’ people did not know where to go”. (Program Officer, NGO, Male)

Basic Necessities: Availability and Access to Medicines

“People did not get their tablets for mental health issues. We had to speak to

vendors. Only those with contacts with suppliers got the medicines. (Program

Manager, Female)

“Those who are on medication for mental health or serious disorder were

completely dependent on free medicines, which had dried up, they could not go to

the district hospital”. (Program Manager, Male)

“Medicines still cost the same but now we also have to pay the police (with lathi

stick!)” (Program Officer, NGO, Male)

Other necessities: Stores, disinfection of assistive products and environment, TV,

internet.

“Wheel chairs or callipers for children need to be designed properly so they are

sanitized regularly”. (Program Officer, NGO, Male)

“Braille things which has to be touched. So how will you protect them? So, we have

to think all these”. (Program Officer, NGO, Male)

Information: Access to accurate information in accessible formats, Authenticity /

Clarity, Format and Content of the Messages, Sensitivity to Culture and Context,

Types of media used

“Information is not in accessible formats. Awareness is given, but reasons are not

explained. Be at home is not enough. Why should people maintain distance, or be

isolated?” (Program Manager, Female)

“Information was only in Hindi or English or regional language, not in the local

dialect, and especially difficult for rural people to follow”. (Program Manager,

Female)

“In rural areas, people could not understand the seriousness of the infection. They

55

were told not to go out, without proper explanation. Its unthinkable for rural people

not to meet each other”. (Program Manager, Female)

“Some NGOs started webinars on various aspects on COVID preparedness, which

is useful for people who have access to smartphones”. (Program Manager, Female)

“We have developed videos about COVID-19 with subtitles and sign language”.

(Govt Official, Male)

“We translated COVID-19 messages in Odia and Santhali tribal language

(handwritten) and distributed to 70 groups of persons with disabilities”. (Program

Officer, Male)

Transport

“Accessible transport is not available, and it is a huge issue. Persons with

disability need an escort, and hospitals were not allowing them in. without the

escort, some Persons with disability cannot manage at all”. (Program Manager,

Female)

“The problem was how to reach the railway station and bus stands. So, we did not

think about this that there will be Persons with disability who will need additional

kinds of support”. (Senior Advisor, NGO, Male)

“Bed ridden people need attenders/caregivers, during the lockdown no outside

caregiver was allowed. We have asked the district collectors to issue passes to

caregivers”. (Govt Official, Male)

Alternative arrangements to meet these challenges?

“We are somehow managing and helping each other. If a family does not have

enough food to eat, we help. If we have a roti (flat bread made of whole wheat) we

share to overcome hunger and work in unison”. (ASHA, PRI Member& Caregiver,

Female)

THEME-3: SERVICES included availability and access to general health services, COVID-

19 services, mental health services, specific rehabilitation services, education and school

services and the exacerbations due to lockdown. Most stakeholders indicated that most of the

medical care was exclusively reserved for COVID-19 and there was shortage of ambulances

for Persons with disability. The minimum support and assistance required for Persons with

disability have not been added to COVID-19 screening and treatment plan. It was observed

that most of the rehabilitation services have come to a halt due to lockdown, similarly with

education and therapy services in the community.

THEME-3: SERVICES

Availability and Access to General Health Services

56

“In this time all medical care was exclusively reserved for COVID. There was a

huge shortage of ambulances for persons with disabilities, now they cannot go to

a normal hospital because of these restrictions”. (Govt Official, Male)

“Not everyone has bike or a bicycle, there are difficulties in reaching the

hospitals”. (ASHA, PRI Member& Caregiver, Female)

“If someone has cough or fever, they are confused if they need to go to the

hospital”. (ASHA, PRI Member& Caregiver, Female)

“The minimum support required for persons with disabilities have not been added

to the COVID treatment plan”. (Program officer, NGO, Male)

“We should request hospitals to reserve one room for disabled people in

coordination with different organisations” (NGO in-charge, Male)

Availability and Access to Mental health services/therapy

“One good thing is that Department of Persons with disability and the RCI, have

put the list and contact details of Psychologists, but how many people will be able

to access?” (Senior Advisor, NGO, Male)

Availability and Access to COVID 19 specific services

“Gram Panchayath has supplied the masks (2 each) to all the families however,

not everyone wears it, as most of them are illiterates and do not know the

significance of wearing a mask as they are not habituated”. (ASHA, PRI

Member& Caregiver, Female)

Availability and Access to Specific rehabilitation services

“Even if his callipers is broken, he can’t go the centre. He will most certainly

deteriorate”. (Program Manager, Female)

“The district early intervention centre RBSK has stopped services including

weekly therapies. So, our workers who did home visits found that contractures

were developing. A physiotherapist’s assistance also cannot reach them”.

(Program Officer, NGO, Female)

Education & School

“Teachers are unable to deliver online courses, they are not ready, not equipped,

don’t know how to do it. We must invest in digital literacy skills of teachers”.

(Program Officer, NGO, Male)

“Parents are worried. Their child was happy earlier, going on a wheelchair to

school. Schools have stopped, their child cannot interact with other children”.

(Program Officer, NGO, Female)

“After 10 days they became restless at home and then they are not obeying the

parents and time spending at home became difficult” (Caregiver, NGO In-charge,

Male)

Exacerbations due to lockdown.

57

“In this COVID time, many small diseases have troubled people very much”.

(ASHA, PRI Member& Caregiver, Female)

“She died due to a simple stomachache, immediately, she couldn’t get the right

doctor”. (ASHA, PRI Member& Caregiver, Female)

“There are restrictions on camps …there is no access to eye care services, it will

lead to worsening disability”. (Program Officer, NGO, Female)

“Behavioural issues are being reported, especially those with intellectual

disability, autism, ADHT, they have reported difficulty in managing”. (Program

Officer, NGO, Female)

THEME-4: PARTICIPATION in work and Livelihood, leisure, stress management,

community activities. Many reported losses of job and unemployment due to lockdown, not

only among Persons with disability but among caregivers of Persons with disability and

children with disabilities at home. Participation in leisure and community activities had

drastically come down due to travel restrictions as well as fear of infection among people.

THEME-4: PARTICIPATION

Work & Livelihood: Engaging in paid / self-employment / Volunteer, Work,


“If the Persons with disability is not a government employee, they lost the job”.

(Program Officer, NGO, Male)

“I am Persons with disability, and I work from home. Our organisation is

incredibly supportive. I am able to interact with my colleagues for work and

sometimes, just to chat, over coffee”. (Program Manager, Female)

“All the work has stopped. Even if we go out for farming or labour work, everyone

is scared”. (ASHA, PRI Member& Caregiver, Female)

“Livelihood has been affected, with children at home” (Program Manager,

Female)

Leisure

“Covid-19 has broken our confidence, if 5 people are there, they are joking and

somebody coughs or sneezes, automatically these 4 people, they may not tell on the

outside, but they fear about getting corona”. (Govt Official, Male)

“So that kind of trust has broken. Proximity is affected. The closeness is not there

now”. (Govt Official, Male)

Time / Stress Management Ability to cope with the situation.

“We run a day care facility for children with ID, and had to close it during

lockdown. We got several calls from parents asking when we will reopen. They are

unable to manage the children”. (Program Manager, Male)

58

Community activities

“The best way to include Persons with disability is to make them master trainers

and involve them in programs and surveillance”. (NGO in-charge, Persons with

disability)

“We are working collaboratively and formed a crisis Covid’19 network and we are

reaching out to all the villages and who are doubly hit by COVID and Cyclone”

(Senior Advisor, NGO, Female)

“We advised disabled tailors (who were not receiving any order due to lockdown)

to start making masks (with help of money from SHG and cooperative), thousands

of masks were made which after our collaboration with different village panchayat

these masks were distributed to villagers from gram panchayat”. (NGO in-charge,

Male)

THEME-5: COMMUNICATION included staying connected with friends and other for

social support, helpline and staying updated with latest information. Communication was a

challenge during the lockdown. The biggest difficulty was reaching the Persons with

disability by NGOs/government to fulfil their needs. Helpline was set up however not many

could access it.

THEME-5: COMMUNICATION

Staying connected: Friends and others for Social support

“Some of my friends, all young women, were in hostels during the lockdown. They

were extremely low. I used to call them often, just to say we are with them. It’s

nothing serious, but their self-esteem dropped, and they started going into a shell”.

(Program Manager, Female)

“If we don’t help each other that’s not good. We conquer the challenges with unity,

only we know how we feel!” (ASHA, PRI Member& Caregiver, Female)

Contacting Helpline

“The biggest challenge was to reach Persons with disability and fulfil their needs.

We developed a helpline number with a psychologist for counselling and

guidance”. (Govt Official, Male)

Staying updated with latest information, Access NEWS, Available Communication

devices and Facilities etc.

“I am literate little bit, so I keep learning some information using my mobile, news,

or hearsay. I try to educate people that it’s a contagious disease so please be

careful”. (ASHA, PRI Member& Caregiver, Female)

“I get information from TV and mobile and text messages. Also, when I go to the

59

meeting, I get to know new information”. (ASHA, PRI Member& Caregiver,

Female)

THEME-6: NETWORKS describes how the various networks of Persons with disability

ensured that new activities were undertaken during lockdown. They included, as the sub-

themes suggest: Awareness Raising, Contribution to support persons with disabilities during

lock down, Approaches and Methods of Contribution, Contribution to COVID 19 activities,

Support / Exchange of Good practice. It was reported many DPOs made significant

contribution during lockdown in helping Persons with disability. Many NGOs helped Persons

with disability in providing necessities such as food kits, dry ration as well as psycho-social

support.

THEME-6: NETWORKS

Awareness Raising

“Our biggest strength is our DPO. The investment that we did over the years to

build their capacity has helped us a lot during this time”. (Program Manager,

Female)

Contribution to support persons with disabilities during lock down

“During peak lockdown, it was difficult to supply tings to Persons with disability

because we didn’t have PPE. After that, it became easy and we supplied all basic

things”. (Program Manager, Male)

“We formed a WhatsApp group of 120 people - individuals and NGOs. They

distributed food, ration” (Senior Advisor, NGO, Male)

Approaches and Methods of Contribution

“They are still doing it, if somebody needs food, somebody will ensure that that

person gets it”. (Senior Advisor, NGO, Female)

“During the lockdown more than 100 of our DPO leaders helped the government

and block level officials”. “They are working with Block Development Office and

visiting different villages, Panchayats etc. to that ensure people are getting ration

with government support. There are good examples from many states where

because of these Persons with disability, many Persons with disability accessed

government support”. (Program Manager, Female)

“This is perhaps the best example we have seen, where no one was left behind in

areas of Persons with disability. And that really helped a lot”. (Program Manager,

Female)

Contribution to COVID 19 activities

60

“We provided food kit, dry ration and psycho-social support, we also supported the

local health centre, PHC, ASHA/AWW to ensure that they are protected. We

provided PPE”. (Govt Official, Male)

Support / Exchange of Good practice

“All the schools are closed and none of our partners are able to... because of the

lockdown. However, they are extending online services to those students”.


“The special educators are visiting some of the houses, ensuring social distancing

and protocols are maintained. We have given counselling and home activities to the

children and the parents to engage the children and maintain their well-being”.

(Program Officer, Female)

THEME 7: COMPASSION included promoting well-being, inclusion and considerations

provided for Persons with disability in current COVID-19 lockdown plans and actions, safety

and hope and self-protection. Many stakeholders reported that many of the guidelines

released by the government during the COVID-19 outbreak was not inclusive, they did not

consider Persons with disability as part of the community and they need assistance in terms

of travel or COVID-19 screening or treatment. Caregivers reported that if the government can

be compassionate and treat the problems faced by Persons with disability as their own, then

all Persons with disability will be comfortable and maintain good health and well-being.

THEME-7: COMPASSION

Protect / Promote Well-being- Inclusion and Considerations provided for persons

with disabilities in current COVID 19 / Lock down plans, actions and policies.

“If the government considers Persons with disability’s problems as that of its own

families, then nobody will be unhappy”. (ASHA, PRI Member& Caregiver, Female)

“MHA came out with guidelines. But they contained nothing about Persons with

disability. We wrote to the Department of Empowerment of Persons with disability.

Then the Department of Empowerment of Persons with Disability came out with a

detailed guideline. So, what happens these guidelines are but they become

standalone guidelines for persons with disabilities, which means these are not

inclusive”. (Senior Advisor, NGO, Male)

Encourage Safety / Hope – during provision of Information, Communication, Treatment,

Screening/Testing, Access to Health and Other Services

“Many DPO members are actually helping Persons with disability to access

medicine sincerely. They are going to the town and getting medicines for them”.


61

Social-distancing / Self Protection - Considerations especially for persons with

disabilities

“No one maintains the social distancing; they feel nothing will happen. Not every

person will have the same thought process”. (ASHA, PRI Member& Caregiver,

Female)

“If anybody comes at home, we say cover your face or maintain distance. Few of

them follow, and few only hear, but don’t follow”. (ASHA, PRI Member&

Caregiver, Female)

THEME-8: FINANCES included access to financial support and pensions, family savings at

individual level and funding cuts at NGOs level. The economic impact faced by Persons with

disability was reported by all stakeholders during the in-depth interviews as well as focus

group discussions. Pensions were affected, loss of livelihood mainly among Persons with

disability with small businesses and petty shops. Persons with disability had to face hardships

not only through loss of income but the inability to travel to draw money from banks or to get

essential groceries. Many had to utilise their family savings during the lockdown. Funding

cuts was reported by stakeholders working in the NGO sector.

THEME-8: FINANCES

Access to services and financial support, Pensions

“We know what are going through, the biggest problem which we have is the

economic impact”. (ASHA, PRI Member& Caregiver, Female)

“Social pension was largely affected”. (Senior Advisor, NGO, Male)

“We were already working on organic farming, so food security was intact. Some

people who owned petty shops took risk and sold stuff through the back door”.

(Senior Advisor, NGO, Male)

“And similarly, some issues like disability pension will be given in advance for

March and April and in May and June they didn’t get the pension. So everybody

thought it is additional pension, while actually it is only advance. When Persons

with disability asked for their May pension, Government said you already got it, in

advance. But people had spent the money. (Senior Advisor, NGO, Male)

“This was a system failure. People did not know… lockdown was on March 20 and

Holi was on March 10, UP and Bihar celebrate holi and Diwali with fervour. Most

pockets got empty during Holi” (Program Officer, Male)

“The hardship during lockdown was only loss of job, or not having amount in their

hands or not able to go to the bank and draw the money or provisions and essential

items not available. For unavoidable medical needs, we are covering these areas

through our helpline assistance”. (Government Official, Male)

“What I heard regarding social security schemes is that, while some people have

got the amount, they are unable to go to the bank or ATM”. (Program Officer,

62

Female)

Family savings

“The whole root cause is the economic situation!” (ASHA, PRI Member&

Caregiver, Female)

“My child fell ill and I had no money, I save money without my husband’s

knowledge, which I had to take out and use. My husband would have earned if

there was no lock down and I would never have utilized my savings, but that could

not happen because of the situation. Lockdown has affected very badly”. (ASHA,

PRI Member& Caregiver, Female)

Funding cuts to NGOs

“NGOs re struggling to get funds. Just like the Government helps business groups,

it should support NGOs working for Persons with disability”. (Program Manager,

Female)

“Big companies feel it is better to give CSR funds to some Department, to earn the

good will of the Minister, who will later help the big company’s business. They are

not bothered about NGOs”. (NGO in-charge, Persons with disability)

THEME-9: GOVERNMENT RESPONSE included needs assessments and data, any

innovations, guidelines and policies in response to COVID-19 pandemic and any other

specific plans and programmes to meet the needs of Persons with disability. Through the

interviews it was indicated that the government may not be prepared for the next wave and

the current situation could have been better for Persons with disability if there was adequate

time for Persons with disability to prepare for the lockdown and make basic arrangements to

get adequate food, water and medicines. Stakeholders indicated that government should

address the livelihoods of Persons with disability and their family so lockdowns such as the

current one has minimal impact on Persons with disability lives.

THEME-9: GOVERNMENT RESPONSE

Needs Assessment, Data

“The right information does not reach the government”. (ASHA, PRI Member&

Caregiver, Female)

“My suggestion is they (govt) have to reach persons with disabilities homes and

investigate in detail. Especially if such a lock down occurs, they need to verify what

is necessary, basic necessities such as food and grains, livelihood, education?

Keeping these in mind they should do the survey and collect data, then the problem

will either reduce or will vanish away. (ASHA, PRI Member& Caregiver, Female)

63

Innovations, Guidelines, Policies etc.

“Persons with disability are always portrayed as the problematic people. Instead,

involve them at all levels and they will solve problems”. (NGO in-charge, Persons

with disability)

“Combine DPO and grassroots level government workers, train them together”.


Specific plans/programmes made to meet the needs of persons with disabilities

“Dairy could make profit despite the lockdown because we were helping with

procuring and distributing locally. (Program Manager, Male)

“Buniyad Kendra is active and we had 38 mobile therapy vans also, with

equipment for physiotherapy, like, then wheelchairs which went to remote areas to

give services”. (Program Manager, Male)

“We had grievance redressal, 62 webinars conducted for Persons with disability,

everything was supplied to their doorstep” (Program Manager, Male)

“We don’t have Persons with disability with COVID, but we arranged for

quarantine facilities according to the needs of the disabled. We have got the order

from the court”. (Government Official, Male)

“Some of the States have done well in providing pension and other schemes to the

Persons with disability. But many States have issues with ration card and PDS

system”. (Senior Advisor, NGO, Male)

Support and promote exchange of good practice

We made WhatsApp group for exchange of information. We connected vegetable

and milk vendors with people who needed, thereby reducing impact on livelihood

(PM, Male)

Preparedness for Next Wave

“Government is not prepared for the next wave. They should involve Gram sabhas

and bring in different agendas including disability, it they are serious about

planning for next disaster”. (NGO in-charge, Persons with disability)

“If I were in the authority, then before I decide on lockdown, I would make

arrangements, these are the basic arrangements, people must get food, water,

medicines and shelter. Everybody is not like me, having a comfortable life and

house. (Senior Advisor, NGO, Male)

“Very important to have the rights of persons with disability in every DDMA

(District Disaster Management Authority). Every district should have a list of

Persons with disability so that they know where is this disaster, where this person

is, what his or her requirements, and arrange for it”. (Senior Advisor, NGO, Male)

“When the government plans rehabilitation programmes, it must consider the

64

organized and unorganized sectors. There should be a focus on really addressing

the livelihood of Persons with disability and their family. People must actively

participate in the income generation programme so they can still cope and manage

the situation. But currently not much is happening, that area should be

strengthened”. (Program Manager, Male)

THEME-10: POSITIVE IMPACT included findings on positive impacts of the COVID-19

pandemic outbreak and lockdown among Persons with disability and their family. Many

reported that Persons with disability and families are spending less and saving more and not

buying non-essential items. Families are spending more time together than earlier and

children with their parents. Reduction in alcohol use and lesser disputes among family

members.

THEME-10: POSITIVE IMPACT

Positive impacts of the Covid-19 outbreak and Lockdown/post lockdown

“We have practised sustainability. We use normal wooden stick and rope for

exercises. We use local materials found in our backyard. We use wet sand /clay to

make toys for children with ID. If it breaks, we can make it again” (Caregiver,

NGO In-charge, Male)

“We learnt many things- how to use technology, how to bond with our family, how

to live without luxurious things. (Program Manager, Male)

“Yes, as we are not buying many things from the market, we are saving some

money. (ASHA, PRI Member& Caregiver, Female)

“The best thing is that the consumption of alcohol has reduced, some say up to 80%

of people who drink had stopped during lockdown. There was peace in the house

without any disputes. But, for the past 15 days, alcohol sale has started, and the

disputes started again. During the lock down there use to be at peace and

happiness as alcoholics were inactive.” (ASHA, PRI Member& Caregiver, Female)

“Children got to see a different face/ personality of their parents” (Program

Manager, Ngo, Male)

“If there are no small community-based institutions in our community, then we will

never be able to manage such crisis” (Program Manager, NGO, Male)

65

Phase II: Easing of lockdown/ Post-lockdown (July 2020)

Quantitative results

A total of 107 persons with impairment were included for the phase II (referred to as easing

of lockdown/ gradual opening of lockdown/ Unlock phase). Here we present the paired

comparisons between ‘during lockdown’ with ‘after easing of lockdown’. McNemars test and

marginal homogeneity test was performed to compare the proportions before and after the

opening of lockdown.

Medical and Rehabilitation services

The results show that majority of the persons did not need the medical services during

lockdown and after easing of lockdown. 60% of the persons found difficulty in accessing the

emergency medical services during lockdown; and after the easing of lockdown, the

percentage reduced significantly to 40% (p value <0.001). Likewise, during lockdown, 75%

found it difficult to access the rehabilitation services, and after easing of lockdown: the

percentage reduced significantly to 41.7% (p value=0.03). Table 33 displays the items related

to difficulty in accessing the medical services

Table 33. Difficulty in accessing any of the following medical and rehabilitation services

during lockdown and after unlock/easing of lockdown

Items

Du

rin

g L

ock

dow

n N

(%)

After easing of lockdown

N(%) P value

Categories Yes No Did not

need

Outpatient

clinics

Yes 19(17.8%) 2(1.9%) 8(7.5%)

0.19 No 10(9.3%) 4(3.7%) 7(6.5%)

Did not

need 1(0.9%) 3(2.8%) 53(49.5%)

Emergency

medical

services

Yes 0(0.0%) 3(2.8%) 12(11.2%)

<0.001* No 1(0.9%) 1(0.9%) 10(9.3%)

Did not

need 1(0.9%) 1(0.9%) 78(72.9%)

Medicines

Yes 7(6.6%) 5(4.7%) 7(6.6%)

0.73 No 8(7.5%) 14(13.2%) 7(6.6%)

Did not

need 5(4.7%) 5(4.7%) 48(45.3%)

Rehabilitation Yes 4(3.7%) 5(4.7%) 4(3.7%) 0.03*

66

services No 0(0.0%) 3(2.8%) 10(9.3%)

Did not

need 1(0.9%) 7(6.5%) 73(68.2%)

Regular blood

pressure

monitoring

Yes 1(0.9%) 0(0.0%) 0(0.0%)

- No 0(0.0%) 0(0.0%) 3(2.8%)

Did not

need 1(0.9%) 0(0.0%) 102(95.3%)

Regular sugar

monitoring

Yes 1(0.9%) 1(0.9%) 1(0.9%)

<0.001* No 0(0.0%) 1(0.9%) 3(2.8%)

Did not

need 0(0.0%) 0(0.0%) 100(93.5%)

Surgical

procedures

Yes 0(0.0%) 0(0.0%) 1(0.9%)

- No 0(0.0%) 0(0.0%) 5(4.7%)

Did not

need 0(0.0%) 0(0.0%) 101(94.4%)

Are you able to

get the

medicines you

regularly take?

(n=91)

Yes 19(20.9%) 3(3.3%) 10(11.0%)

0.38 No 5(5.5%) 4(4.4%) 7(7.7%)

Did not

need 14(15.4%) 1(1.1%) 28(30.8%)

Is online

consultation

helpful for you

Yes 2(1.9%) 0(0.0%) 6(5.6%)

0.14 No 0(0.0%) 0(0.0%) 10(9.3%)

Did not

need 5(4.7%) 1(0.9%) 83(77.6%)

Marginal homogeneity test

*Statistically significant at 5% level of significance

Mental Health

Only 4.7% of the persons had problems in relationship during lockdown. After the

unlock/easing, it decreased to 1.9%. However, this difference is statistically not significant (p

value=0.25). Of the total 107, a third (33%) of the persons had experienced stigma and 17.8%

had experienced discrimination during lockdown. After the unlock/ easing phase it decreased

to 7.5% (p value <0.001) and 3.7% (p value<0.001) respectively (Table 34)

Table 34. Proportion of participants experiencing various issues during lockdown and unlock

phase /easing of lockdown phase

Items

Du

rin

g L

ock

dow

n

N(%

)

After easing of

lockdown N(%) P value

Categories Yes No

Problems in relationship Yes 2(1.9%) 3(2.8%)

0.25 No 0(0.0%) 102(95.3%)

Change in family

dynamics

Yes 1(1.0%) 7(6.7%) 0.99

No 6(5.8%) 90(86.5%)

Abandonment Yes 1(0.9%) 5(4.7%)

0.06 No 0(0.0%) 100(94.3%)

67

Isolation Yes 0(0.0%) 7(6.6%)

0.18 No 2(1.9%) 97(91.5%)

Stigma Yes 6(5.7%) 29(27.4%)

<0.001*

No 2(1.9%) 69(65.1%)

Violence Yes 1(0.9%) 1(0.9%)

0.99 No 0(0.0%) 104(98.1%)

Discrimination Yes 4(3.7%) 15(14.0%)

<0.001* No 0(0.0%) 88(82.2%)

Mcnemars test


Impact on Mental health & well-being

24.3% of the persons were afraid of infection during the lockdown, while only 8.4% feared

infection after easing of lockdown (p value<0.001). Irrespective of the lockdown or release,

47.7% of the persons were afraid of infection. Out of the total 107, only 2.8% were not afraid

of infection. The results indicate that there was a statistically significant difference in the

proportion of persons who were bothered about interruption of care giver pre- and post-

lockdown(p=0.027). Table 35 shows the participants’ feelings during and after easing of

lockdown

Table 35. Comparison of participants’ feelings during lockdown and after easing of

lockdown

What is bothering you

most? After easing of lockdown N(%) P value

Items Categories Not at all Moderately A lot

Fear of Infection

Du

rin

g L

ock

dow

n N

(%)

Not at all 3(2.8%) 14(13.1%) 9(8.4%)

<0.001* Moderately 5(4.7%) 35(32.7%) 16(15.0%)

A lot 1(0.9%) 8(7.5%) 16(15.0%)

Fear of infecting

others

Not at all 14(13.1%) 15(14.0%) 6(5.6%)

0.82 Moderately 19(17.8%) 40(37.4%) 4(3.7%)

A lot 2(1.9%) 6(5.6%) 1(0.9%)

Fear of dying

Not at all 33(30.8%) 13(12.1%) 1(0.9%)

0.37 Moderately 21(19.6%) 33(30.8%) 2(1.9%)

A lot 1(0.9%) 0(0.0%) 3(2.8%)

Lack of support

Not at all 40(37.4%) 10(9.3%) 4(3.7%)

0.40 Moderately 11(10.3%) 29(27.1%) 5(4.7%)

A lot 1(0.9%) 4(3.7%) 3(2.8%)

Gender based

violence

Not at all 91(86.7%) 3(2.9%) 0(0.0%)

0.02 Moderately 7(6.7%) 0(0.0%) 0(0.0%)

A lot 4(3.8%) 0(0.0%) 0(0.0%)

Loss of income

Not at all 20(19.4%) 8(7.8%) 9(8.7%)

0.32 Moderately 5(4.9%) 13(12.6%) 15(14.6%)

A lot 8(7.8%) 8(7.8%) 17(16.5%)

Interruption of Not at all 71(78.9%) 7(7.8%) 0(0.0%) <0.001*

68

care giver Moderately 6(6.7%) 2(2.2%) 0(0.0%)

A lot 3(3.3%) 1(1.1%) 0(0.0%)



Of the total, more than 50% of the persons with impairment were stressed before and also

after easing of lockdown, of which 17% were feeling extremely stressed. The McNemar's test

determined that there was a statistically significant reduction in the proportion of persons

with stress (p value= 0.001), anxiety (p value =0.001), stigma (p value <0.001) and

discrimination (p value<0.001) after the easing of lockdown (Table 36 & Table 37)

Table 36. Level of stress & anxiety among the participants

Items After easing of lockdown N(%)

P

value

Categories Not at all Moderately A lot

Stressed

Du

rin

g L

ock

dow

n F

(%

)

Not at all 2(1.9%) 7(6.6%) 1(0.9%)

0.001* Moderately 7(6.6%) 38(35.8%) 27(25.5%)

A lot 0(0.0%) 6(5.7%) 18(17.0%)

Overwhelmed

Not at all 8(7.7%) 15(14.4%) 2(1.9%)

0.19 Moderately 4(3.8%) 51(49.0%) 6(5.8%)

A lot 1(1.0%) 10(9.6%) 7(6.7%)

Anxious

Not at all 10(9.5%) 15(14.3%) 4(3.8%)

0.02* Moderately 5(4.8%) 50(47.6%) 6(5.7%)

A lot 1(1.0%) 5(4.8%) 9(8.6%)

Uncertain

Not at all 5(4.8%) 15(14.3%) 3(2.9%)

0.74 Moderately 4(3.8%) 36(34.3%) 12(11.4%)

A lot 6(5.7%) 14(13.3%) 10(9.5%)



Table 37. Participants’ experience during lockdown and after easing of lockdown

Items

Du

rin

g L

ock

dow

n N

(%)

After easing of lockdown

N(%) P value

Categories Yes No

Problems in

relationship

Yes 2(1.9%) 3(2.8%) 0.25

No 0(0.0%) 102(95.3%)

Change in family

dynamics

Yes 1(1.0%) 7(6.7%) 0.99

No 6(5.8%) 90(86.5%)

Abandonment Yes 1(0.9%) 5(4.7%)

0.06 No 0(0.0%) 100(94.3%)

Isolation Yes 0(0.0%) 7(6.6%)

0.18 No 2(1.9%) 97(91.5%)

Stigma Yes 6(5.7%) 29(27.4%)

<0.001*

No 2(1.9%) 69(65.1%)

Violence Yes 1(0.9%) 1(0.9%) 0.99

69

No 0(0.0%) 104(98.1%)

Discrimination Yes 4(3.7%) 15(14.0%)

<0.001* No 0(0.0%) 88(82.2%)

McNemars test


Access to mental health services and psychological impact on caregivers

There was a statistically significant increase in the proportion of persons who were able to get

regular mental health counselling or therapy related services (p value= 0.03). 48.6% did not

need mental health & care, psychological or emotional support and services. Less than 1% of

the persons faced problem for getting regular psychiatric medicine Table 38 displays details

on the access to mental health services. There was no significant difference in relation to

caregiver’s mental health during lockdown and after easing of lockdown.

Table 38. Access to information related to mental health

Items

Du

rin

g L

ock

dow

n N

(%)

Categories

After easing of lockdown N(%) P

value Yes No Did not

need

Access to information related

to mental health & care,

psychological or emotional

support and services (n=107)

Yes 8(7.5%) 1(0.9%) 2(1.9%)

0.63 No 10(9.3%) 6(5.6%) 18(16.8%)

Did not

need 7(6.5%) 3(2.8%) 52(48.6%)

Able to get regular mental

health counselling or therapy

related services (n=107)

Yes 4(3.7%) 0(0.0%) 1(0.9%)

0.03* No 3(2.8%) 5(4.7%) 5(4.7%)

Did not

need 6(5.6%) 6(5.6%) 77(72.0%)

Facing any problem for getting

your regular psychiatric

medicine if prescription date

was old and you cannot get

recent prescription (n=107)

Yes 1(0.9%) 1(0.9%) 0(0.0%)

0.60 No 1(0.9%) 3(2.8%) 6(5.6%)

Did not

need 1(0.9%) 2(1.9%) 92(86.0%)

Only for caregivers

Getting enough professional

support (n=67)

Yes 10(14.9%) 2(3.0%) 7(10.4%)

0.13 No 4(6.0%) 2(3.0%) 3(4.5%)

Did not

need 1(1.5%) 3(4.5%) 35(52.2%)

Feeling stressed, anxious, or

depressed with caring for

children or other family

members at home with

impairment (n=44)

Yes 0(0.0%) 6(13.6%) 2(4.5%)

0.16 No 0(0.0%) 3(6.8%) 24(54.5%)

Did not

need 0(0.0%) 1(2.3%) 8(18.2%)



70

Education, Livelihood, and social empowerment

There was no statistically significant difference in education, livelihood, and social

empowerment before and after easing of lockdown (Table 39 and 40)

Table 39. Education and Livelihood

Items

Du

rin

g L

ock

dow

n N

(%)

Categories

After easing of

lockdown N(%) P value

Yes No

(only for respondents with

children)

On being confined to the home,

the children feel distressed

(n=31)

Yes 19(61.3%) 4(12.9%)

0.99

No 3(9.7%) 5(16.1%)

Since all schools are closed, it

affected the child learning (n=26)

Yes 18(69.2%) 1(3.8%) 0.13

No 6(23.1%) 1(3.8%)

School is providing online

teaching to children (n=24)

Yes 8(33.3%) 2(8.3%) 0.99

No 3(12.5%) 11(45.8%)

Impact on daily activities (n=98) Yes 58(59.2%) 19(19.4%)

0.09 No 9(9.2%) 12(12.2%)

Affected the Supply chain of

material that you have developed

(N=10)

Yes 2(20.0%) 1(10.0%)

0.38 No

4(40.0%) 3(30.0%)

Affected the supply of farm

inputs like seeds, fertilizer, and

Pesticides? (N=9)

Yes 1(11.1%) 1(11.1%)

0.22 No

5(55.6%) 2(22.2%)

Affected the transportation of

input and output supply due to

lack of transportation (N=17)

Yes 6(35.3%) 6(35.3%)

0.29 No

2(11.8%) 3(17.6%)

Affected the facility of water

supply

Yes 0(0.0%) 9(31.0%) -

No 0(0.0%) 20(69.0%)

The current situation is affecting

the Pensions / Remittance

(N=74)

Yes 10(13.5%) 19(25.7%)

0.99 No

18(24.3%) 27(36.5%)

Getting full wages / pay? (N=83) Yes 14(16.9%) 12(14.5%)

0.14 No 5(6.0%) 52(62.7%)

Borrowing money (N=101) Yes 33(32.7%) 12(11.9%)

0.99 No 11(10.9%) 45(44.6%)

Getting updates that you require

for your business (such as price,

suppliers)

Yes 4(36.4%) 0(0.0%)

- No

0(0.0%) 7(63.6%)

I will accept any job for low pay

because of poor income (N=24)

Yes 11(45.8%) 4(16.7%) 0.99

No 5(20.8%) 4(16.7%)

Able to sell your

produce/products (N=19)

Yes 8(42.1%) 1(5.3%) 0.99

No 1(5.3%) 9(47.4%)

Loan/funds available with

inclusive Cooperatives (n=50)

Yes 1(2.0%) 2(4.0%) 0.69

No 4(8.0%) 43(86.0%)

McNemars test

71

Table 40. Impact of lockdown on participation and social empowerment of Persons with

disability

Items

Du

rin

g L

ock

dow

n N

(%)

Categories

After easing of

lockdown N(%) P

value Yes No

a) Panchayat Raj Institution

(PRIs) as Members?

Yes 8(20.0%) 17(42.5%) 0.06

No 7(17.5%) 8(20.0%)

b) Village relief work? Yes 13(26.5%) 15(30.6%)

0.13 No 7(14.3%) 14(28.6%)

c) social mobilization with

other community members

for community issues?

Yes 37(66.1%) 3(5.4%)

0.06 No 11(19.6%) 5(8.9%)

d) participation in village

level COVID response and

planning?

Yes 37(64.9%) 3(5.3%)

0.06 No 11(19.3%) 6(10.5%)

e) Disabled people

organization (DPO)

meetings

Yes 48(67.6%) 9(12.7%)

0.99 No 10(14.1%) 4(5.6%)

f) Do they feel that after

lockdown, working with

community and PRIs will

change?

Yes 52(66.7%) 9(11.5%)

0.99 No 10(12.8%) 7(9.0%)

McNemars test


Out of the total 107 persons with impairment during the repeat survey, 72.9% hesitated to go

to hospital because of fear of getting COVID. 86% were scared to go out and meet others.

78.1% did not fear the lack of companionship.

72

Phase II: Easing of lockdown/ Post lockdown (July 2020)

Qualitative results:

Post Lockdown Findings

As indicated in Table - 32, the 2 focus group discussions were repeated after easing of

lockdown. The findings are as follows:

THEME-1: Difficulties in daily life and management describes problems faced by Persons

with disability after easing of lockdown or post-lockdown. Most of the respondents reported

that there has not been much change compared to lockdown phase. Persons with disability are

trying to cope with the situation and many have accepted that it is like other diseases such as

malaria or dengue.

THEME-1: DIFFICULTIES IN DAILY LIFE & MANAGEMENT

Personal Care Needs and Management

“From field level feedback, reflection and reports not much change has happened

in the last one and half months. Situation remains same but people are trying to

cope up with it”. (Program Manager, Male)

“We have to live with the COVID-19 like other diseases, malaria, dengue”

(Program Manager, Male)

Psychological impact

“There are many challenges with respect to children with disability. They are still

at home, and really frustrated particularly autistic children they are very much

disturbed”. (NGO In-Charge, Male)

‘The parents are getting worried on what next? With no schools, how long we can

take care of children at home?” (Caregiver, NGO In-charge, Male)

THEME-2: ACCESS and availability to basic necessities such as food & water, medicines,

and transport. Access to food and non-food items are better as many NGOs within their

capacity have provided them to Persons with disability. However, in some regions, costs of

groceries and vegetables have gone up. Availability to free medicines provided by specific

government programmes are still not fully functional as many health workers and staff are

absorbed in COVID-19 response.

THEME-2: ACCESS

Basic Necessities: Availability and Access to Food & Water

73

“The costs of other commodities like vegetable and groceries have risen”. (NGO

In-Charge, Male)

“Access to items like food, grain, food and non-food items within the capacity and

resources collected through various sources have been provided to Persons with

disability”. (Program Manager, Male)

Basic Necessities: Availability and Access to Medicines

“Fire and rescue mission are helping people who require medicines, which are not

available locally. Any other essentials also are brought by the Fire and Rescue

Mission”. (Caregiver, NGO In-charge, Male)

“One challenge pertains to availability of medicine for people with psycho-social

disability or mental health issues who are regularly taking medicine. For them it is

a big challenge as even the district mental health programme is not functioning

well because all medical staff is engaged in COVID-19 response”. (Program

Manager, Male

Transport

“We are running a day-care centre but beneficiaries are not coming there now

because no transport is there”. (Caregiver, NGO In-charge, Male)

THEME-3: SERVICES included availability and access to general health services, COVID-

19 services, mental health services, specific rehabilitation services, education and school

services and the exacerbations due to lockdown. Most stakeholders indicated that access to

general health services is still a problem to Persons with disability as the government is

focussing on COVID-19 response. Costs for testing or admissions at hospitals have gone up.

Educational services are being provided online but mostly in urban areas, reach to rural and

remote areas is still difficult.

THEME-3: SERVICES

Availability and Access to General Health Services

“Public health machinery and complete task forces are only focusing on COVID

response. No other regular business is happening. General health is a bigger

concern especially for people who visit the PHC, district hospital, but they are only

serving the COVID-19 cases and other emergency cases which has created bigger

issues” (Program Manager, Male)

“Any patient coming to the hospital is treated as COVID patient. First COVID test

is done then the treatment starts. Initially they don’t admit patient if at all they

74

admit, they don’t attend properly. They themselves are scared of this infection”.

(NGO In-Charge, Male)

“They began charging huge amount for admission, testing. Even for normal test

they charge a huge amount, cost of one-day treatment is around 30- 60 thousand

like that. It is a huge problem. But the government is also trying to control”. (NGO

In-Charge, Male)

Availability and Access to Mental health services/therapy

“For people needing regular psychosocial support the project has stared tele-

counselling services” (Program Manager, Male)

“We are continuing early intervention therapy for children below 6 years of age on

WhatsApp. We have found a very novel way of doing that. Our therapist, a gives

instruction on phone saying you have to perform these activities”. (Program

Manager, Female)

“Interventions are done on one-to-one basis others have to replicate it. Those

recorded videos are also circulated on WhatsApp group and others also learn from

it. The therapist also writes the instruction on a paper and circulates on the

WhatsApp. She gives instructions like how to feed children how they should eat on

their own.” (Program Manager, Female)

Availability and Access to Specific rehabilitation services

“Rehabilitation is challenging till now, as most of the people are not able to access

rehabilitation services like some of the therapeutic services and assistive devices,

they need. Few hospitals began early rehabilitation services through the members

of the disabled people’s organisation in the community who are aware about where

the children with disabilities are in the villages”. (Program Manager, Male)

“Through mobile, WhatsApp group and sharing of videos or through one to one

talk over the telephone with the carers, rehabilitation services to the needy is being

provided”. (Program Manager, Male)

Education & School

The situation continues to be challenging like it was 2 months back. (Program

Manager, Female)

Education is happening mostly in urban and peri-urban settings but in remote

places in the villages it is extremely difficult. (Program Manager, Male)

Schools are in lockdown but the services continue like it was done earlier. From

providing casual services and remedial services they have now moved to some kind

of academic support. Regular classes have resumed in a way; subject teaching has

started. In some places resuming the services despite our willingness is difficult due

to lack of internet connection or TV connection. (Program Manager, Female)

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Looking at the larger parameter, what is currently being provided is not effective as

a result, because of the lack of knowledge, skills and gadgets and understanding of

the whole e-learning. (Program Manager, Male)

Currently it remains just an interaction between the teacher and students. It is not

considered as an alternate to the schools as most of the government school teachers

are not familiar with all these software and apps. This is seen as a bigger challenge


Exacerbations due to lockdown.

“A partner in one of the states reported that the eye care hospital turned into

COVID treating centre. So, patients suffering and needing eye care after screening

they cannot access and their cataracts surgery are postponed and not allowed”


THEME-4: PARTICIPATION in work and Livelihood, leisure, stress management,

community activities. As observed during lockdown period, many reported losses of job and

unemployment, not only among Persons with disability but among caregivers of Persons with

disability and children with disabilities at home. As reported earlier, apart from government

pensions, there is no other income source as most have lost small businesses such as petty

shops. Participation in leisure activities have improved as many NGOs are conducting online

activities such as music competitions, sports activities, etc.,

THEME-4: PARTICIPATION

Work & Livelihood: Engaging in paid / self-employment / Volunteer, Work,


“There is lot of unemployment, underemployment, wage cuts and job loss were

reported. Example – Migrant who returned back to the community doesn’t have

sufficient income and business still”. (Program Manager, Male)

“For the poor and marginalised, employment is still a question, both in

unorganised and organised sector which is not functional” (Program Manager,

Male)

“Apart from pension there is no other income source as most have lost their small

businesses like petty shops”. (Program Manager, Male)

“At some places parents are going for daily wage work and children are left

without any engagement and no means of support”. (Program Manager, Female).

“After the Atma Nirbhar announcement by government, departments like

agriculture have become active now including NABARD and some banks because

they have been assigned some target. They are trying to support the migrant and

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the small holder farmers. Where we have this advantage to include Persons with

disability in small farmers where we work in some of the states”. (Program

Manager, Male)

Leisure

“We have arranged online sports activities”. (NGO In-Charge, Male)

“Lot of agencies and parents’ association are conducting various kinds of

competition through WhatsApp and video calls, like drawing and music

competition. But the reach is not very much. Only the top layer of society is being

reached”. (Caregiver, NGO In-charge, Male)

Community activities

“The larger NGOs played a vital role”. (Program Manager, Male)

“Corporates supported, which came as a timely relief. There are several network

and individuals voluntarily distributed food packet, grain and grocery packets to

persons with disabilities on the roads and slums and vulnerable occasions”.


THEME-5: COMMUNICATION included staying connected with friends and other for

social support. Post lockdown many respondents reported that they are more confident of

supporting Persons with disability at home as there was no external support in the last few

months.

THEME-5: COMMUNICATION

Staying connected: Friends and others for Social support

After spending three-month time with the family, family members know how without

external support they can support Persons with disability family members and

sibling. People are more supportive to such people in their own homes. (Program

Manager, Female)

THEME-6: NETWORKS describes how the various networks of Persons with disability

ensured that new activities were undertaken after easing of lockdown or post-lockdown.

Respondents reported that many NGOs continue to help Persons with disability in providing

basic necessities such as food kits, dry ration as well as psycho-social support. Some big

corporates have come forward to support NGOs in supporting Persons with disability.

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THEME-6: NETWORKS

Awareness Raising

Like earlier, we give them the WASH kit, and lot of training and orientation are

being given on awareness part of Covid-19

Contribution to support persons with disabilities

“There is no specific support from the government especially for persons with

disability. Whatever support is provided to the general people we are extracting

from that. We are getting support from corporate but not from the government.”

(NGO In-Charge, Male)

Approaches and Methods of Contribution

“The advantage of hospital’s community-rehabilitation programme is that they are

using Persons with disability volunteers in the community, who are identifying and

referring people to the hospital. They are also helping people to come to the

hospital and ensure that they are getting services”. (NGO In-Charge, Male)

Support / Exchange of Good practice

“We have been organising training for corporates and making presentations. They

promised to provide support with respect to virtual meetings; We are trying for

more such partnerships particularly with IT companies”. (NGO In-Charge, Male)

THEME 7: COMPASSION included promoting well-being, inclusion and considerations

provided for Persons with disability during post lockdown and plans and actions, safety and

hope and self-protection. Many stakeholders reported at the village level, the attitude of

panchayat officials even political leaders have become positive towards Persons with

disability and it is a positive change observed in this pandemic.

THEME-7: COMPASSION

Protect / Promote Well-being- Inclusion and Considerations provided for persons

with disabilities in current COVID 19 / Lock down plans, actions and policies.

At the village level when the government schemes began to be implemented, the

attitude of Panchayat, PRIs members and local political leaders became positive

and they wanted that Persons with disability should get all the support. A positive

change that we have seen. (Program Manager, Male)

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THEME-8: FINANCES included access to financial support and pensions, family savings at

individual level and funding cuts at NGOs level. The economic difficulties continue to impact

Persons with disability even after lockdown has been eased. Loss of livelihood was reported

mainly among Persons with disability with small businesses and petty shops.

THEME-8: FINANCES

Access to services and financial support, Pensions

“Apart from pension there is no other income source as most have lost their small

businesses like petty shops”. (Program Manager, Male)

“Project is trying to support with the available resources and build their income

generating micro enterprises. But the challenge remains due to limited resources

and banks are not willing to give loan to poor people”. (Program Manager, Male)

Funding cuts to NGOs

“The staff of XXXX not been paid salaries for 3 months. The staff is working but

that is harming children’s home as well as their own home”. (NGO In-Charge,

Male)

THEME-9: GOVERNMENT RESPONSE included about any innovations, guidelines and

policies in response to COVID-19 pandemic and any other specific plans and programmes to

meet the needs of Persons with disability after easing of lockdown. Like earlier, stakeholders

indicated that government should address the livelihoods of Persons with disability and their

family so pandemics has minimal impact on Persons with disability lives. After easing of

lockdown, government has taken initiatives and many circulars such as concessions to

teachers, concessions given to attend offices and schools were circulated among NGO

partners and Persons with disability.

THEME-9: GOVERNMENT RESPONSE

Specific plans/programmes made to meet the needs of persons with disabilities

“Many government circulars and SOPs have been circulated which we have shared

with our members and homes and even schools though they remain closed”. (NGO

In-Charge, Male)

“There are other circulars like concessions to teachers, concessions given to attend

offices and schools”. (NGO In-Charge, Male)

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THEME-10: POSITIVE IMPACT included findings on positive impacts of the COVID-19

pandemic outbreak and after easing of lockdown among Persons with disability and their

families. Many respondents agreed that government is more responsive compared to

lockdown period. Attitudes of people have changed towards Persons with disability.

THEME-10: POSITIVE IMPACT

Positive impacts of the Covid-19 outbreak and post lockdown

The government in general are now more responsive. (NGO In-Charge, Male)

Attitude of people have definitely changed towards Persons with disability, which

many project partners is acknowledging (Program Manager, Male)

More people when they are talking of development they are talking about inclusion.

If in a village there are Persons with disability then they are also thinking about

them, which is a great and positive change. (Program Manager, Male)

There are positives. After relaxation they are able to go out with restrictions and do

some of their work. (Program Manager, Female)

One thing appreciable is the teacher’s attitude to teach despite all the difficulties.

They want to do something for the children and somehow reach the children in

whatever possible way, which is appreciable. (Program Manager, Female)

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Case Studies

(i) Program Manager describing the activities that he initiated for reducing economic impact

of COVID

(ii) Director of NGO describing how persons with disability beat all odds and become small

entrepreneurs

We worked on several fronts. We have a producer organisation; we have applied for a pass for

procurement. On facing difficulty, we went to the DM and SDM sir with our board of directors

and explained about producer organisation they immediately understood the concept and we got

permission and further continued to do our work. First we contacted our farmers and started

collecting milk and distributing consumers. This was in animal husbandry. In organic farming

we started to have small stalls. We took permission and along with milk products selling points

we set stall to sale vegetables purchased from small scale farmers. MSP was fixed for each

vegetable, which was not very different from market value. Aiming to see that money of

transportation was saved. We started collecting grains from farmers and for making wheat

flour. (Program Manager, NGO)

I realized that the poor PERSONS WITH DISABILITIESs are facing a really difficult time in

two ways in terms of livelihood. One is those doing small livelihood activities. It is a gradual

journey for such PERSONS WITH DISABILITIESs. to become self-dependent. It starts from

being ignored they join self-help groups, farmer producer organisation, cooperative societies,

then move to discussion group, and then move to decision group/ mode. Then from decision

they move to development group, then they become small entrepreneurs and then start their

own small businesses. Step by step they move up. They were working in small areas as barber,

beautician/sale of beauty products, tailoring, bangles shop, stationary, computer trainers,

clerical work, chart corner, sweet shop, Pan shop, auto repairing, driving, electronics shops,

priest, salesman, delivery boys, Tent House, hardware, shoes shop utensil shops, candle

making, peon, salesman in mall showroom, delivery boys, vendors, mason, painter, home

tutors, and some females work as maids at homes. Their livelihood got affected very seriously

due to lockdown. But people started helping each other by selling essential items like milk,

vegetables, daal etc., among themselves or on credit on repayable basis.

(Director, NGO)

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(iii) Description of how a community based rehabilitation effort done previously has paid off

during COVID time, by a Program Manager.

Community-based rehab is very important because through community based we talk about

individual rehabilitation. For instance, if we have increase a person’s mobility, movement

of limbs, exercises, to stop muscle wastage, so for that generally we use local resource as

exercise materials. Instead of gym equipment we use normal wooden stick tied with rope

for various exercises. Secondly Persons with disability having even little skill like carpentry

or iron work, we engaged them in making assisted devices, adaptive agriculture tools.

Through this we can depend for small repair work like bicycle etc. within the village instead

of sending it outside for repair. So community-based inclusive development is very

important, and we should develop it as much as possible, like seed bank within the

community. The more we focus on local resource the more it will be easy for us, because

local is most easily available, and can be found in our backyard. We don’t need go

anywhere.

For small children many toys are available for intellectual disability, but we use wet sand

as clay and make clay moulds like square, rectangle, sphere to increase skill works. And

paint them with colour available in the village. If it breaks we can make it again. It is easy

to use for a child.

(Program Manager, NGO)

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Key Findings and Discussion

Lockdown Phase

Medical

42.5% reported that lockdown has made it difficult to get routine medical treatment

More than half the respondents (53.5%) said that continuous lockdown might affect

their health in future

12.7% who reported of pre-existing medical conditions, more than half of them (58%)

reported difficulty in getting routine medical treatment.

28% reported that they had postponed regular medical appointments due to lockdown.

About 35% reported the need of out-patient services at hospitals/clinics during

lockdown and more than half (55.6%) had difficulty in accessing the required

services.

Similarly, 16.6% reported the need of emergency medical services during lockdown

and nearly 45% had difficulty in accessing emergency services.

About 35% of Persons with disability used assistive devices, of which the use of

mobility devices was the most common (63.2%).

Majority (73.9%) reported that they sanitize their assistive devices, 87.8% reported

sanitizing at least thrice a day. Commonly with soap and water (~40%) and plain

water (20%).

Majority of the persons said that they did not need the medical services during

lockdown and after easing of lockdown.

Rehabilitation

About 17% (n=69) reported the need of physiotherapy and rehabilitation services

(Table-12). Of the people who were in need, majority (59.4%) had difficulty in

accessing the required services.

77.9% of persons with disabilities reported that they were supported by their family

for assistance with activities of daily living.

70.7% Persons with disability opine that the government has not given any special

considerations to Persons with disability during the lock down, especially in terms of

access to vital information, rehabilitation /therapy support services

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During lockdown, 75% found it difficult to access the rehabilitation services, and after

easing of lockdown: the percentage reduced significantly to 41.7% (p value=0.03).

Persons with disability did not receive any government rehabilitation services for their

needs and program managers were sure that the disability getting severe given this

situation. The lockdown has also restricted ambulation and transport services for

accessing therapy if needed,

After the ease of lock-down, most of the services were accessed by Persons with

disability and was also provided by government through WhatsApp and tele

counselling.

Mental Health

We found a significant proportion (~70-80%) of Persons with disability with

feelings of stress and anxiety, many overwhelmed with the COVID-19 lockdown

situation and feeling uncertain about the future.

Majority of the respondents (>65%) were worried about fear of COVID-19

infection and about loss of income due to lockdown.

Nearly half the participants reported of lack of support, many faced stigma (22%),

discrimination (13%) and abandonment (3%).

More than 75% of the parents and caregivers felt moderate to high level of stress

in caring for children or other family members at home with impairment

Less than 9% had any access to mental health services such as helpline or online

counselling. Most (>90%) received emotional and practical support from family

during the lockdown.

Education

73.3% of the respondents (parents only) felt that on being confined to home the

children felt distressed.

65.9% of the schools were not providing online teaching to children during

lockdown. Among the ones who received online teaching only 9.3% said that the

teaching was not in accessible formats.

Livelihood

Majority (84.2%, N=320) of the participants mentioned that lockdown impacted

their daily activities pertaining to livelihood.

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The supply chain of material that they had developed was affected in 57.1%.

The supply of farm inputs like seeds, fertilizer, and pesticides were impacted in

60.3% of participants

Movement of input and output supply due to lack of transportation was impacted

for 76.2% of participants.

Facility of water supply was affected in 34.3%

The lockdown affected the pensions / remittance among 33.1%.

Around (45.7%) were borrowing money because of lockdown, mainly for

livelihood (65.2%).

The main method by which they were coping with the financial crisis situation

was through borrowing food/ money from relatives/ friends/ neighbours.

Only 9.2% of participants thought they will accept any job for low pay because

of poor income after lockdown ends.

Only 18.2% thought loan/funds were available with inclusive Cooperatives

Social empowerment

Lockdown seems to have impacted participation in social empowerment

activities: 54.2% said it impacted work as PRI members

52.9% of the participants agreed that it impacted village relief work

74.6% of the participants said it impacted working as a DPO member

Key Findings from Qualitative Interviews and Focus Group Discussions

The findings from participant perceptions reiterated that COVID-19 itself has not impacted

Persons with disability as much as the lockdown has. People want to help Persons with

disability but are scared to give a hand due to fear of infection. It was reported that it is

difficult to teach hygiene practices to people and to Persons with disability with assistive

devices in few days. The lockdown had a critical negative impact on Persons with disability.

There were instances of abandonment of Persons with disability in institutional facilities.

The belief that “When time comes everyone has to die” came up during the interviews.

There was difficulty in accessing necessities such as food due to the lockdown, specifically

due to the financial situation of Persons with disability. Government provided rice but only

rice wouldn’t suffice the needs of Persons with disability, there was no fuel among many.

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There was a significant disruption in accessing medicines due to lockdown, with travel bans

and no travel passes and poor understanding by police, Persons with disability faced

significant difficulty in getting their daily medicines. Persons with disability with caregivers

were not allowed to travel and caregivers faced difficulty to reach Persons with disability

homes due to travel bans. Many NGOs helped Persons with disability in providing necessities

such as food kits, dry ration as well as psycho-social support

Information about COVID-19 was not in accessible formats, not in the regional language or

dialect. Awareness was given but the reasoning was poorly explained. In some regions,

COVID-19 messages were translated into local languages and videos about COVID-19 were

developed with subtitles and sign language.

Most of the health services was reserved for COVID-19, there was shortage of ambulances

for Persons with disability and without them many Persons with disability could not go to a

hospital for routine follow-up due to these restrictions. The minimum support required for

Persons with disability have not been added to COVID-19 treatment plan. Most of the

rehabilitation services had come to a halt due to lockdown, similarly with education and

therapy services in the community. The district early intervention centre RBSK had stopped

services including weekly therapies. Physiotherapists couldn’t reach Persons with disability

due to restrictions. With schools closed, children with disabilities were impacted the most,

teachers were unable to deliver online classes, parents were equally worried as children are

restless and do not know how to engage them. With no schools and children at home

livelihood of parents have been affected. With regard to leisure activities, there is constant

fear of infection to meet people, the close interactions between people were almost nil.

Participation in leisure and community activities had drastically come down due to travel

restrictions as well.

Home activities were provided by NGOs to the children and the parents, to engage the

children and maintain their well-being. They also supported the local health centre and PHC,

ASHA/AWW to ensure that they are protected, by distributing PPE. The Persons with

disability created WhatsApp groups to distributed food, ration, and worked in close proximity

with the Block Development Office, visited different villages, Panchayats etc. to ensure

people are getting ration that the government had provided. The NGOs expressed happiness

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that the previous investments of strengthening DPOs are finally paying off during COVID. It

was reported many DPOs made significant contribution during lockdown in helping Persons

with disability.

Livelihood was one of the most affected due to lockdown, which had a significant economic

impact on families. The economic impact faced by Persons with disability was reported by all

stakeholders during the in-depth interviews as well as focus group discussions. Pensions were

affected, loss of jobs, loss of livelihood mainly among Persons with disability with small

businesses and petty shops. Persons with disability had to face hardships not only through

loss of income but the inability to travel to draw money from banks or to get essential

groceries. Many Persons with disability working in private sector lost their jobs. With

children with disabilities at home, many parents could not go to work. Fear of infection

affected farming and labour work. In many regions, work and livelihood was affected not

only due to COVID-19 lockdown but other natural calamities such as cyclone. Lockdown had

a negative psychological impact and one of the most common reason was economic

difficulty.

The biggest problem faced by Persons with disability was economic impact, with poor access

to services and financial support, and social welfare and pensions being affected. There was

miscommunication with regards to advance pension, where Persons with disability thought it

was additional pension given by government, considering the difficult situation. By the time

the clarification arrived from officials that it was only an advance, and not additional sum,

they had already spent the amount. There was a mismatch of perception of difficulty: the

opinion of government officials was that the main problem faced by Persons with disability

was not lack of earnings or money, but an inability to go to the bank to withdraw cash.

NGOs expressed serious worry about impending funding cuts. Some participants mentioned

positive happenings of having a safeguard due to working on organic farming, so that food

security was intact. Some people who owned petty shops took a risk and sold things

surreptitiously even during lockdown, to tide over the economic compulsion presented by the

lockdown.

Another biggest challenge was to reach Persons with disability and fulfil their needs. Some of

the state governments have developed helpline with psychologists for counselling and

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guidance. Many accessed latest information related to COVID-19 on TV news channels,

through mobile and from friends and neighbours.

Participants lamented that although the government released guidelines for Persons with

disability after facing pressure from NGOs, they may become standalone guidelines, and may

not be inclusive. With respect to inclusion and other considerations, many participants

mentioned that DPOs went out of their way to provide medicines for persons with disabilities

during lock down. Social-distancing and self-protection was however not being followed

strictly.

Respondents suggested that the government should conduct needs assessment to know about

the needs of Persons with disability. They felt that if Persons with disability are involved at

all levels, many issues can be solved. Specific plans/programmes made to meet the needs of

persons with disabilities were mentioned. Some described how they created support groups,

connected demand with supply, and promoted exchange of good practice. The participants

thought that the Government is not prepared in terms of readiness for the next wave of

COVID. They suggested involving Persons with disability in District Disaster Management

Authority and at every level, during planning of activities, to better tackle another wave of

infection in the community.

Many indicated that government may not be prepared for the next wave and the current

situation could have been better for Persons with disability if there was adequate time for

Persons with disability to prepare for the lockdown and make basic arrangements to get

adequate food, water and medicines. Stakeholders indicated that government should address

the livelihoods of Persons with disability and their family so lockdowns such as the current

one has minimal impact on Persons with disability lives.

Participants discussed some of the positive impacts of the Covid-19 outbreak and

lockdown/post lockdown, including learning new skills, practising sustainable activities,

bonding with the family, saving money by reducing expenditure, and so on. Some attributed

the resilience to the presence of small community-based institutions, while others were happy

that the availability and consumption of alcohol had dropped considerably during lockdown.

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Key Findings and Discussion

Post Lockdown/Easing of Lockdown Phase

60% of the persons found difficulty in accessing the emergency medical services

during lockdown and after the easing of lockdown, the percentage reduced

significantly to 40% (p value <0.001).

Out of the total 107 persons with impairment during the repeat survey, 72.9%

hesitated to go to hospital because of fear of getting COVID. 86% were scared to

go out and meet others.

Likewise, during lockdown, 75% found it difficult to access the Physiotherapy /

Paramedical services, and after easing of lockdown, the percentage reduced

significantly to 41.7% (p value=0.03).

Compared to lockdown period, there was a significant reduction in the proportion

of persons experiencing stress, anxiety, stigma and discrimination after easing of

lockdown.

Similarly, with easing of lockdown significantly lesser number of participants

were worried about interruption of caregivers.

There was a statistically significant increase in the proportion of persons who

were able to get regular mental health counselling or therapy related services after

easing of lockdown

There was no significant difference in relation to caregiver’s mental health during

lockdown and after easing of lockdown

There was no statistically significant difference in education, livelihood, and

social empowerment before and after easing of lockdown

Composite analysis showed-The lockdown had impacted more than 80% of the

persons with impairment in terms of medical (81.4%), rehabilitation (88.6%),

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mental health (86.4%), education and livelihood (86.1%). However only 52.3%

of the persons were impacted in the areas of Social empowerment

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Qualitative Findings

There was not much change in lives of Persons with disability after lockdown was eased

across regions in India. The attitude that “we have to live with COVID-19 like other diseases

such as dengue or malaria” was observed. The situation continues to have negative

psychological impact on Persons with disability and parents of children with disabilities. The

costs of commodities like vegetables and other groceries have risen. Access to medicines

have improved with lesser travel restrictions and the help of local authorities. However, free

medicines which were provided through government programs are still not available to

Persons with disability. In some places day care facilities have started but Persons with

disability are unable to reach as there is no public transport.

Access to general health services continues to be poor, most governments are focussing on

COVID-19 services and not on other health services. In some regions, people visiting general

hospital are treated as COVID-19 patients. Costs for other health services have increased.

With regard to therapy and rehabilitation, in many urban regions, WhatsApp have been used

to provide early intervention services online for children. Recorded videos have been

circulated via WhatsApp and through one to one conversation over the telephone with the

carers, rehabilitation services to the needy is being provided. Schools and educational

services continue to be a challenge like earlier. Some of the urban and peri-urban regions

have benefitted with online services, remote places with poor connectivity are still struggling.

Employment and livelihood continue to be a significant problem for Persons with disability.

For many poor and marginalised, employment is still a question in both organised and

unorganised sector. Apart from pensions, there is no income sources as most have lost their

small businesses like petty shops.

There is no specific financial support from the government for NGOs working with Persons

with disability. Whatever support is being provided are from larger NGOs and with financial

support from corporates but not from the government. There were several networks and

individuals who voluntarily distributed food packets, grain and grocery packets to persons

with disabilities on the roads and slums.

At the village level the attitude of Panchayat, PRIs members and local political leaders have

become positive and they want to support Persons with disability. A positive change has been

seen. Attitude of people have definitely changed towards persons with disability. More

people when they are talking of development they are talking about inclusion. If in a village

there are persons with disability then they are also thinking about them, which is a great and

positive change.

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Conclusions

This study, conducted in 14 states of India, assessed the level of disruption on the living

conditions of Persons with disability due to COVID-19 and related restrictions and to

generate evidence to inform actions for future pandemics or emergency preparedness. The

findings of this study have highlighted the concerns of Persons with disability, their care

givers and the health and developmental systems due to COVID-19. These observations

should be used to prepare protocols and guidelines to tackle such emergencies in the future.

Advocacy with the governments is critical so that the response to such a health or non-health

emergency in the future can be quickly mounted and operationalized. An inclusive plan to

mitigate the adverse impact should be in place quickly and implemented immediately rather

than losing a lot of time in the response cycle.

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Recommendations

The recommendations are organized in way the results were reported. These

recommendations are made primarily based on the findings from the study and do not include

anything out of its scope.

Healthcare:

People with disabilities had trouble in accessing general health care as well as care for

COVID-19 screening and treatment. The difficulty was higher during the lockdown and it

reduced while the lockdown was eased. The reason being Persons with disability and their

family have tried to cope as well as decided to live with the situation over the period.

1. Access to general/specific information for Persons with disability about COVID-19

screening, treatment as well as general health care must be made available.

2. This information must be made available in accessible formats (e.g. Large prints, Alt text

in webpages, Sign Language interpretation in any media broadcasts, etc.)

3. Persons with disability require assistance to access health care, especially those who are

unemployed, those who depend on monthly disability pensions and those who need routine

check-ups for hypertension, diabetes and other comorbidities. Hence special assistance and

disabled-friendly COVID-19 protocols (e.g. which hospital is accessible, how to access

medicines, can Persons with disability be assisted by an escort, will access be disabled

friendly, how should one travel? etc.) must be available and accessible to them.

4. Provide supplies such as medicines, disinfectants, masks etc. for Persons with disability to

protect themselves as well as others from COVID-19 infections.

Rehabilitation Services:

Close to 2/3rd of the study participants reported that the government has not given any special

consideration during the lockdown, especially in terms of access to vital information related

to rehabilitation, therapy support, and other services.

1. Access to general/specific information for Persons with disability in relation to

rehabilitation, therapy support, and other specific services must be made available to them in

accessible formats.

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2. COVID-19 Secure guidelines and protocols (how should rehabilitation services be

provided, when to initiate tele-rehabilitation, how to sanitise assistive devices etc.) for both

accessing as well as the provision of rehabilitation and therapy services to both Persons with

disability, especially children with special needs as well as rehabilitation service providers

must be developed and implemented.

3. Enable secure service provision using innovative strategies such as tele-rehabilitation or

with collaborations from existing private service providers to cater to the therapy and support

needs of persons with disability, especially children who were receiving services through the

RBSK programmes.

Mental Health:

3/4th of the study participants experienced moderate to high levels of stress, anxiety, and

uncertainty about the future. They were overwhelmed because of the lock-down. These

experiences were statistically significant with participant's age and employment status.

1. Consistent awareness generation in accessible formats must be the top priority, especially

since close to 90% are fearful of meeting others, and may affect their mental health adversely

2. Mental health services should be made more accessible and available for Persons with

disability during the lockdown. Online counselling services might help Persons with

disability in the management of stress and overcoming their fear and anxiety.

Livelihood:

Participants expressed that the unexpected lockdown measures impacted more negatively

than the COVID-19 pandemic in not just their livelihoods but also their families. Their

livelihood came to a standstill because they were unable to work, earn, and economically

contribute to their family. Support in terms of livelihood and employment might help in

reducing the level of stress, their worry about the loss of income, and feelings of uncertainty

about the future among Persons with disabilities. Drastic steps should be undertaken to

mitigate this as a priority by

1. Respective State Government must ensure Relief measures, Special financial assistance,

Subsidies, Furlough schemes, Access to interest-free loans for improving, or at least to

maintain current livelihoods.

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2. Borrowing money to run the households was seen commonly, and for this, the NGOs,

DPOs, cooperatives, etc. must infuse seed money wherever possible, to break the cycle of

debt among Persons with disability.

3. Loans available from cooperatives, and the obstacles to availing such loans must be

quickly cleared by conducting a needs assessment of Persons with disability, especially for

the economic requirements.

4. Best practices such as organic farming and dairy and the income from these initiatives

being a means to sustain livelihoods among others should also be promoted for enabling the

livelihood of Persons with disability.

5. Pensions were accessed by two-thirds of Persons with disability, which is a good sign. But

this could reduce, with increasing funds that could be diverted to COVID related activities.

Keeping in mind the programmatic and financial needs of disability welfare programs, the

government should ensure that they are not negatively impacted in future.

Education:

Schools were closed and many parents of children with disabilities and special needs reported

that they were unable to support their children in education and learning. Neither they were

informed or provided with essential assistance in terms of access to internet, electronic

gadgets etc. for continuing education amidst of the lockdown in a safe and effective way.

1. Standards for special education must be developed and implemented to provide access to

education for Persons with disability, especially children with special education needs and

those who were actually accessing education in specialised educational settings.

2. Online education for children in schools must be provided in accessible formats. To avoid

the pressure of buying smart phones by parents, education must be provided in formats that

are easy for parents to receive, both economic and technology wise. For Example, Special

educators could prepare individualised education plan for children and train the parents

through phone or a school website podcast to deliver this to their children at home.

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3. Parent training plans must be developed and implemented through innovative strategies

like special apps for parents. Provision of free internet services for Persons with disabilities

who requires access to internet for education etc.

4. Every school must hold responsibility for education of Persons with disability within their

capacity by providing them with essential materials, technology gadgets, training,

information, and weekly/monthly plans to sustain effective learning.

Social Participation:

Persons with disability were unable to participate effectively during the lockdown. Though

the context and levels of participation are diverse. In this study, we looked exclusively at

engagement with the community.

1. With due considerations to precautionary measures, the participation of persons with

disabilities in DPO meetings, as PRI members and in local level activities must be urgently

strengthened, and the gains made over all these decades in inclusive planning must be

consolidated.

2. All the gains made so far for Persons with disability should be sustained, and not lost. This

can be done by inclusive planning at all levels of activities at governmental and non-

governmental sectors.

Health systems:

Strengthen the existing system (District Rehabilitation Centres) to respond to the

rehabilitation needs (in addition to health care needs) of Persons with disability

Develop specific programs and policies for Persons with disability especially to

protect them from being more vulnerable to the pandemic situation

Convergence between the health and social welfare department to protect the Persons

with disability from additional vulnerability.

Prioritise Persons with disability when developing a program or strategy to combat

emergency situations like the pandemic.

Include Persons with disability in the development and implementation of any plan,

policies, strategies and programmes

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Plan ahead for any future emergencies of this scale with people centred and evidence-

based approach to empowerment of Persons with disability.

Invest in research and strengthening of systems for social care and empowerment of

Persons with disability in India.

97

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ANNEXURE -1

Additional Literature Review Details:

1. Disability, Urban Health Equity, and the Coronavirus Pandemic: Promoting

Cities for All

https://link.springer.com/content/pdf/10.1007/s11524-020-00437-7.pdf

Urban health equity is a key element of the urban planning. It can be achieved if

legislators rely on the social model of disability that considers “urban design and

policy” as fallible/culpable rather than individual impairments.

Recommendations:

Public Health information should be made available in audio, braille, e-pub, and easy-

to-understand formats; using real time captioning; relay services and text messages

and ensuring digital information complies with W3C accessibility standards. Persons

with disability and Disabled People’s Organizations should be consulted through a

participatory approach and included in ‘Pandemic Response Task Forces’ to ensure

“Universal design and Access are mainstreamed into mitigation and response

strategies.” Continuum-of-care through access to nutritious diet, housing, in-home

school, and community support should be provided. Paid sick leave when approved to

caregivers ensures their adherence to physical distancing practices and “financial

support (increased funding) is essential for developmental disability service providers

to arrange back-up assistants in case of emergencies.” Restriction on hiring of family

members for caregiving must be eliminated as a policy response. Adopt and enforce

more stricter labour protection laws to ensure Persons with disability are not

dismissed from work due to unfair practices / discrimination. These all together

comprise an ‘urban disability justice strategy’ wherein ‘systemic ableism and

structural exclusion’ are addressed beyond the COVID-19 crisis, “providing health

practitioners, researchers and policy-makers an opportunity to rebuild cities that are

more inclusive and healthier for all.”

2. COVID-19 in People with Mental Illness: Challenges and Vulnerabilities

https://pubmed.ncbi.nlm.nih.gov/32298968/

Suggested Interventions:

https://link.springer.com/content/pdf/10.1007/s11524-020-00437-7.pdf


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Limiting exposure to media-related misinformation, promoting precautionary

measures, advocating against stigmatization and marginalization. Facilitating

problem-solving by enhancing self-efficacy (as per Banerjee, D., 2020). Education on

stress symptoms and their management through sleep hygiene and relaxation

techniques.

3. COVID-19 and disabled people: Perspectives from Iran

https://www.tandfonline.com/doi/full/10.1080/09687599.2020.1754165

A study in Iran reported the barriers to access requisite interventions due to restricted

transportation within and between cities, which has been imposed as an emergency

response to COVID-19. The authors also bring forth the problems of people with

visual impairment, who eventually rely on tactile perceptions which increases their

risk to infection by SARS- Cov2. Similarly, people with movement disorders would

not be able to independently apply preventive measures like hand-washing and

hygienic maintenance of their assistive devices.

4. COVID-19: maintaining essential rehabilitation services across the care

continuum

https://gh.bmj.com/content/5/5/e002670

In this commentary describing modifications made to rehabilitation services as part of

national COVID-19 preparedness and response across 12 low, middle- and high-

income countries, shorter duration of inpatient-rehabilitation services have been

reported in India, Belgium, Tanzania and the United Kingdom. All countries have

been functioning at ‘reduced service capacity’. Rehab services include supporting

stroke patients to develop balance techniques or fitting prosthetic limb to an amputee,

all which require direct contact with patients and protection of personnel especially

those redeployed from their original work environment to different settings owing to

care constraints in such areas should be a strategic priority. For equitable provision of

virtual health services (for ex: -telemedicine) rehabilitation should be one of the

essential components of Universal Health Coverage as practiced in Germany, Guyana

and the UK. Caregivers should be trained to ensure effective caregiving amidst the

pandemic by experts as evident in countries like the USA, Brazil and China, through

tech-enabled communication tools like live webcast sessions and chatbots. This

requires adequate finances and infrastructure that prevents many countries from


https://gh.bmj.com/content/5/5/e002670

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implementing these measures. To ensure cybersecurity and access to high bandwidth

networks, collaborative leadership of professionals, government and global

community via public-private partnership is the need of the hour. Another area of

importance is public health communication wherein the inputs from rehab consultants

should be sought prior to dissemination with due consideration for a disability-

inclusive response.

5. The human rights of children with disabilities during health emergencies: the

challenge of COVID‐19

https://onlinelibrary.wiley.com/doi/pdf/10.1111/dmcn.14526

This paper recommends conquering the pandemic through a humanitarian response

inclusive of children with disabilities. This implies steps to prevent issues like

negligence, abuse and separation from family which are some examples of violating

their human rights and forsaking their dignity. Promoting individual and collective

rights instils autonomy and fosters progress of children with disabilities.

6. Digital triage for people with multiple sclerosis in the age of COVID-19

pandemic

https://link.springer.com/content/pdf/10.1007%2Fs10072-020-04391-9.pdf

For patients with multiple sclerosis, who are on immunotherapy or with other

comorbidities ‘remote assessment of symptoms and triaging using customized digital

tools that are patient-centric’ can help reduce the risk of contracting covid. This article

suggests steps to be implemented prior to, during and post-encounter with the health

system. This ‘proactive screening process through google forms’ enables patients to

access healthcare services from the comfort of their homes, thus ‘minimizing the

economic burden’ in addition to increased scope for ‘individualized surveillance’

7. The experience of the COVID-19 pandemic in a UK learning disability service:

lost in a sea of ever-changing variables – a perspective


For inpatients with intellectual disability receiving support from NHS sponsored

Learning Disability service in UK, COVID-induced lockdown implied limited access

to visitors and only one telephonic conversation with family members per day. The

isolation and uncertainty had mixed effects with some adults age around thirty years

https://onlinelibrary.wiley.com/doi/pdf/10.1111/dmcn.14526

https://link.springer.com/content/pdf/10.1007%2Fs10072-020-04391-9.pdf


103

old, with either social anxiety, avoidance or autism spectrum disorder, finding it less

demanding while others with generalized anxiety suffer lockdown. Report reveals an

instance of suicidal ideation as access to therapies and social support was denied in

the aftermath of lockdown leading to hospital-admission to ensure patient-safety.

Some service-users who self-identified their vulnerability experienced significant

increase in anxiety levels. Despite modified rules like one outing per day permitted to

people with IDD, for physical activity/exercise, its benefits are minimal given the

disruption of daily routines. Ensuring confidentiality during teleconsultation over

virtual platforms has been a challenge to doctors, support staff and end-users.

8. Covid-19 and Spinal cord injuries: The viewpoint from an emergency

department resident with quadriplegia


People with SCI are at increased “risk of missing a COVID-19 diagnosis” due to

altered physiology and impaired sensorimotor functioning. In this article, the author

underscores the need for ‘aggressive early preventive measures’ to be immediately

adopted by Persons with disability in general, and those with (SCI) Spinal cord

injuries in particular. Neglect of ethical principles by healthcare professionals while

triaging for ventilators based on unestablished stereotypic grounds elevates the

vulnerability of those with SCI to be disproportionately affected. ‘Social admissions’

of Persons with disability to hospitals when caregivers are quarantined increases the

burden on already constrained health system and rapid social arrangements should be

facilitated to reunite Persons with disability with the community.

9. Facing COVID-19 with a disability

https://opinion.bdnews24.com/2020/05/29/facing-covid-19-with-a-disability/

“Even if you know where to go, there is nowhere to go.” For the 16 million Persons

with disability in Bangladesh amounting to 10% of the national population (in 2010),

fewer resources at hand, make them completely depend on external support for food

and finances. The BRAC survey identified that sign language is

perceived/comprehended differently across various regions even within Bangladesh

and the standardized Bangla sign language had limitations in reaching out to various

sub-groups.


https://opinion.bdnews24.com/2020/05/29/facing-covid-19-with-a-disability/

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10. The COVID-19 Global Pandemic: Implications for People with Schizophrenia

and Related Disorders

https://academic.oup.com/schizophreniabulletin/advance-

article/doi/10.1093/schbul/sbaa051/5826166

People with Schizophrenia have “impaired decision-making capacities and insight

which may be aggravated due to comorbid substance-use disorders known to be

highly prevalent in this group.” This makes them vulnerable to acquiring infection as

they cannot comprehend and adhere to preventive measures and “the effects of stigma

on care-seeking” compounds their ailments. Although there isn’t any specific

evidence between clozapine medication prescribed to patients with schizophrenia and

coronavirus-related deaths, risk is not contraindicated because increased clozapine

concentrations as an immune response to pneumonia (one of the covid complication),

result in increased difficulty in swallowing, causing sedation, hyper salivation, and

eventually death.

11. How Does COVID-19 impact Students with Disabilities/Health Concerns?

https://arxiv.org/ftp/arxiv/papers/2005/2005.05438.pdf

In Spring, 2020 when COVID-19 has been in full bloom in Seattle, more than half of

the students with disabilities (SWDs) inquired expressed concerns about receiving

worse academic grades in the upcoming quarters and having to move their degree

requirements in comparison to twenty percent of students without disabilities. There

were also apprehensions on negative impact of courses that might not go online,

prospective admissions to major being jeopardized, uncertainty of graduation timing

and status of financial aid. The degree of worry/concern varied across disability types.

Students with high fatigue preferred staying home as against those with hearing

impairment who had to prepare for accessing audio-material through transcripts or

sign language translators. However, there wasn’t any statistically significant

difference in concerns about online classes between university students with sensory

impairments and their peers with other disabilities/health concerns. In case of mental

health, there was a distinct experience of tension within households during the

lockdown period for students with disability compared to their counterparts without

health concerns. In addition to COVID-related worries, stressors included increased

exposure to chronic discrimination (derogatory remarks) and major life adversities

(interpersonal-conflict, maltreatment). Students with disability reported difficulty

https://academic.oup.com/schizophreniabulletin/advance-article/doi/10.1093/schbul/sbaa051/5826166

https://academic.oup.com/schizophreniabulletin/advance-article/doi/10.1093/schbul/sbaa051/5826166

https://arxiv.org/ftp/arxiv/papers/2005/2005.05438.pdf

105

concentrating, trouble sleeping and had negative feelings associated with isolation.

All these suggest increased vulnerability of SWDs to multiple stressors and it is

recommended that occasional absences do not affect student evaluation and online

classes be designed for asynchronous learning, with instructors offering a ‘connecting

experience to students rather than elevating their distress’.

12. Impact of the COVID-19 Epidemic on Stroke-Care and Potential Solutions

https://www.ahajournals.org/doi/10.1161/STROKEAHA.120.030225

According to the Big Data Observatory Platform for Stroke of China, there was a

26.7% decrease in the total number of thrombectomy cases and 25.3% drop in

thrombolysis cases across 200 registered hospitals for stroke care in February, 2020

during which Covid-19 peaked in the country. Hospital admission rates declined by

nearly 40% in 2020 compared to the same period in 2019. Despite a slight increase in

treatment rates, the absolute number of cases dropped by approximately 25% in all

hospitals. In addition to people not visiting hospitals and deficits in public awareness

on stroke, the authors suggest lack of transportation and inadequate ambulance

resources as the contributing factors for this reduction. COVID-19 screening process

including patients’ febrile illness and insufficient stroke medical staff could also be

attributed to the increased door-to-needle time although currently there isn’t any

existing evidence.

Recommendations:

CT Scanners and laboratory resources should be allocated on priority to patients with

myocardial infarction for prompt treatment. Also, along with awareness on covid-19,

public health information on stroke-signs ought to be disseminated. Organizing

national level campaigns to promote hospital evaluation for stroke and other diseases

requiring specialist intervention within the golden hour is a crucial factor. Preventive

measures aimed at reducing recurrent stroke rate should be executed. Alerting and

directing stroke patients to designated centres would ensure fast-track-stroke-care

pathways and help overcome COVID-induced challenges to a large extent. Protocols

for ensuring rapid COVID-screening process for potential stroke patients should be

framed and adopted.

13. Disability through COVID-19 pandemic: Neurorehabilitation cannot wait

https://www.ahajournals.org/doi/10.1161/STROKEAHA.120.030225

106

https://onlinelibrary.wiley.com/doi/abs/10.1111/ene.14320

Delayed hospital access for people with chronic neurodegenerative diseases like

dementia, multiple sclerosis and movement disorders has an unduly impact on their

neurorehabilitation needs. Telerehabilitation in the form of exergaming, robotic-based

and exoskeleton interventions could help address physical, cognitive and language

rehabilitation needs through digital media. However, persons with severe disability

having imbalance, remote sessions on virtual platforms cannot replace physical

therapies.

Recommendations:

Simultaneous occupancy of patients in common waiting halls should be reduced to a

minimum and physical distancing measures while queuing should be properly

implemented. Waiting areas and medical equipment should be sanitized multiple

times each day. PPE especially masks could hinder practice of logopedic exercises,

language training and other physical activities requiring simulation and so alternatives

like transparent panels, face shields should be provided to Persons with disability

based on their specific individual requirements. Masks also interfere with emotional

communication means wherein facial expressions reflect empathy. This could affect

mechanisms of neuropsychological support, ultimately slowing the healing process.

14. Rehabilitation in the wake of Covid-19 - A phoenix from the ashes

https://www.bsrm.org.uk/downloads/covid-19bsrmissue1-published-27-4-

2020.pdf

COVID being a ‘multisystemic condition’ requires specialist rehabilitation service

inputs under the directions of consultants in rehabilitation medicine. Individualized

needs of each patient ought to be served through Rehabilitation Prescription system

after proper assessment post-discharge from Intensive Therapy Units to reintegrate

them with their communities. The same individual might present with diverse

requirements at different stage of recovery, owing to secondary effects caused by the

blend of personal, socio-economic, and environmental determinants. This amalgam of

factors involved might further be worsened by COVID-related uncertainty, anxiety,

and fear, particularly among in-patients undergoing rehabilitation who are alienated

from visitors in view of executing the precautionary steps. “In the wake of the ‘new

normal’ patients requiring aerosol-generating interventions, group therapies and

hands-on treatments cannot avail them and those with disabling conditions receiving

https://onlinelibrary.wiley.com/doi/abs/10.1111/ene.14320

https://www.bsrm.org.uk/downloads/covid-19bsrmissue1-published-27-4-2020.pdf

https://www.bsrm.org.uk/downloads/covid-19bsrmissue1-published-27-4-2020.pdf

107

long—term support might suffer, as staff are re-deployed to COVID-wards.” Close

networking amongst critical care, acute medical and specialist rehabilitation

professionals is recommended to ensure appropriate linkages at multiple levels of care

synchronized with prior-identified recovery pathways. Multi-disciplinary rehab teams

should comprise occupational, physical, speech and learning therapists,

neuropsychologists, dieticians, and nurses to cater to both covid-positive and negative

streams of patients. Electronic assistive technologies and orthotics should be procured

in advance and facilitated through coordination between departments of health care

and social protection services.

15. The Impact of the COVID-19 Pandemic on Disabled and Hospice Home Care

Patients

https://academic.oup.com/biomedgerontology/advance-

article/doi/10.1093/gerona/glaa081/5815717

Recommendations:

To maximize health outcomes and minimize physical contact, home care patients with

disability, should be assigned home-isolation. If family members ought to be

quarantined, alternative space like quarantine hotels should be arranged. Advisory on

COVID-preventive measures should be multilingual to avoid communication barriers

for daily carers hired from countries like Vietnam, Philippines and Indonesia. Medical

personnel performing invasive procedures like replacement of tracheostomy or

nasogastric tubes as part of home-care should be self-vigilant and use protective

gowns and masks to avoid potential risk from splashing of secretions.

16. Covid-19 and persons living with disability

https://www.standardmedia.co.ke/health/article/2001372918/covid-19-and-

persons-with-disability

The Kenyan government’s national council for Persons with disability has so far

provided monetary support only to those who cannot walk, speak or feed themselves

characterized as having severe disability, while many patients with neurological

impairments are precluded from receiving cash-transfers.

17. Covid-19: Life under lockdown for people living with disabilities

https://academic.oup.com/biomedgerontology/advance-article/doi/10.1093/gerona/glaa081/5815717

https://academic.oup.com/biomedgerontology/advance-article/doi/10.1093/gerona/glaa081/5815717

https://www.standardmedia.co.ke/health/article/2001372918/covid-19-and-persons-with-disability

https://www.standardmedia.co.ke/health/article/2001372918/covid-19-and-persons-with-disability

108

https://www.dailymaverick.co.za/article/2020-05-21-life-under-lockdown-for-

people-living-with-disabilities/#gsc.tab=0

Mobility an elderly woman with disability affected as fellow passengers reluctant to

help her reportedly due to ignorance and innate fear of contracting the virus by

touching the wheelchair although it has been sanitized.

18. Mental health effects of school closures during COVID-19

https://www.thelancet.com/pdfs/journals/lanchi/PIIS2352-4642(20)30109-7.pdf

“Children with ASD might become frustrated and short-tempered due to disruption of

daily routines” according to Chi-Hung Au a psychiatrist in Honking. In a survey on

young people under 25 years of age with pre-existing mental health issues in UK,

83% reported that the ongoing pandemic made their conditions worse.

19. The public health response to the COVID-19 pandemic for Persons with

disability

https://www.sciencedirect.com/science/article/pii/S1936657420300686

Recommendations:

In order to provide targeted interventions, disability identifiers should be an integral

part of data collection systems incorporated for surveillance and monitoring purposes.

To identify mortality amongst people with different types of disability, data from vital

registration systems at national, state, and local levels could be used despite

limitations in accuracy and coding of death certificates. Sensitizing frontline data

collectors on such issues could help improve the validity. Alternatively, where

available linking data from prevailing secondary sources such as electronic health

records and Medicaid service systems could be beneficial to analyze disability-

specific impacts. Specific protective measures like limiting visitor access,

temperature-screening, providing personal protective equipment (masks, gloves)

within care-homes should be enforced. To overcome adverse effects of isolation,

resilience building strategies like engaging Persons with disability in virtual

gatherings, social chat rooms, online exercise, movie/game nights could prove useful

in addition to providing exclusive hours for maintenance services like hair hygiene

and dental appointments. Specialized grocery delivery services including extending

curb side pickups and safe-ride-share services for accessing testing centres would be

beneficial. Relaxation of no visitor policy and allowing a sign language interpreter in

https://www.dailymaverick.co.za/article/2020-05-21-life-under-lockdown-for-people-living-with-disabilities/#gsc.tab=0

https://www.dailymaverick.co.za/article/2020-05-21-life-under-lockdown-for-people-living-with-disabilities/#gsc.tab=0

https://www.thelancet.com/pdfs/journals/lanchi/PIIS2352-4642(20)30109-7.pdf

https://www.sciencedirect.com/science/article/pii/S1936657420300686

109

ICU as a reasonable accommodation to Persons with disability who require assistance

in activities of daily living should be the revised protocol to be adopted by hospitals to

ensure patient-provider communication. Persons with disability should be included in

the priority group to be vaccinated or provided with potential life-saving treatments,

given their vulnerability. Preparedness and response measures ought to be

periodically modified in concordance with the emerging situation.

ANNEXURE -2

QUANTITATIVE QUESTIONNAIRE (for the Person with Disability/Caregiver)

GENERAL:

Name of the person interviewed:

Age: Sex:

Type of disability:

Occupation:

Date: Place:

Village: Taluka: District: State:

Name of the staff & CBM Partner:

----------------------------------------------------------------------------

1. What is your marital status?

a) Never married b) Married c) Separated d) Divorced e) Widowed

2. Do you have children? a) Yes b) No

If yes, How many?

3. How much disability pension do you receive per month?

Rupees _____________

4. Assistive Device:

a) Do you use any assistive device? a) Yes b) No

b) Which assistive device do you or persons with disabilities currently

use?

c) Do you/persons with disabilities sanitize it while using it? a) Yes b)

No, if yes, How many times do you sanitize it in a day?

d) How do you sanitize it (with what)?

MEDICAL

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5. Do you have any medical conditions?

a) Yes b) No

5.a. If yes ______________

6. Do you feel lockdown has made it difficult for you to get routine medical

treatment?

a) Yes b) No

6A. Do you feel continuous lockdown will affect your health in future?

a) yes b) No

7. Did you face difficulty in accessing any of the following medical services

during the lockdown?

A) Outpatient clinics – a) Yes b) No c) Did not need

B) Emergency medical services – a) Yes b) No c) Did not need

C) Medicines – a) Yes b) No c) Did not need

D) Physiotherapy / Paramedical services: a) Yes b) No c) Did not need

E) Regular blood pressure monitoring: a) Yes b) No c) Did not need

F) Regular sugar monitoring: a) Yes b) No c) Did not need

G) Surgical procedures: a) Yes b) No c) Did not need

8. Are you able to get the medicines you regularly take?

a) Yes b) No

9. Has lockdown affected your health insurance scheme?

a) Yes b) No c) do not have health insurance

10. Is online consultation helpful for you?

a) Yes b) No C) didn’t use it

11. Are you getting the same kind of care now, as before?

a) Yes b) No

12. Have you postponed regular medical appointments because of lockdown?

a) Yes b) No

13. Have you had any medical condition where you had to postpone getting medical

help because of lockdown?

a) Yes b) No

REHABILITATION:

14. Who helps you in your daily activities?

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a) ASHA b) Paid caregiver c) Volunteer d) Family e) Others f) do not

require help

15. Which of the following therapies do you receive?

a) Physio b) OT c) Speech d) Prosthetics e) Others f) do not require

therapy

16. How do you receive therapy services during the lockdown?

a) In person at home b) In person at govt. rehab centre

c) Private therapy centre d) Virtual session e) Telephone session

f) Not receiving therapy due to lockdown

17. Do you think therapy /rehabilitation support services are available for persons

with disabilities during the lock down?

a) Yes b) No

18. Do you think that you will be capable of managing yourself in case of another

lockdown?

a) Yes b) No c) not sure

19. Has the government given any special considerations to Persons with disability

during the lock down, especially in terms of access to vital information,

rehab/therapy support services?

a) Yes b) no

MENTAL HEALTH

20. What is bothering you the most since the lockdown

A. Fear of Infection

a) Not at all d) Moderately f) A lot

B. Fear of infecting others


C. Fear of dying


D. Lack of support

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E. Gender based violence


F. Loss of income


G. Interruption of care giver


Any other _____________________________

21. Since the COVID-19 outbreak, to what extent have you felt each of the

following:

A) Stressed a) Not at all b) Moderately c) A lot

B) Overwhelmed a) Not at all b) Moderately c) A lot

C) Anxious a) Not at all b) Moderately c) A lot

D) Uncertain a) Not at all b) Moderately c) A lot

22. Have you experienced any of the following during the lockdown?

a) Problems in relationship

b) Change in family dynamics

c) Abandonment

d) Isolation

e) Stigma

f) Violence

e) Discrimination, Others, please specify ___________-

23. Do you have access to information related to mental health & care,

psychological or emotional support and services? Ex: Mental health helpline,

online counselling, stress management tips etc.)

a) Yes b) No c) do not need

24. Have you been able to get regular mental health counselling or therapy related


a) Yes b) No c) Did not need

25. Did you face any problem for getting your regular psychiatric medicine if

prescription date was old and you cannot get recent prescription?


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26. From whom are you getting emotional or practical support from family and

friends during COVID-19 outbreak?

Please specify ___________________

Question -27, 28 & 29 to be answered specifically by caregivers

27. As a caregiver/parent, are you getting enough professional support during this

covid19 outbreak like earlier?


28. As a caregiver, are you feeling stressed, anxious or depressed with caring for

children or other family members at home with disability?


29. As a parent or caregiver, did you feel unhappy when the therapy for your child

had to be stopped during lockdown?


EDUCATION AND LIVELIHOOD

30. On being confined to the home, did the children feel distressed?

a) Yes b) No

31. Since all schools are closed, has it affected the child learning?

a) Yes b) No

32. Is the school providing online teaching to children?

a) Yes b) No

32A. If yes, is it in accessible formats? Yes No

33. Has the lockdown impacted your daily activities pertain to livelihood?

a) Yes b) No

34. Has the lockdown affected the following?

A. Supply chain of material that you have produced/ developed?

a) Yes b) No c) Cannot say

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B. supply of farm inputs like seeds, fertilizer and Pesticides?

a) Yes b) No c) cannot say

C. transportation of input and output supply due to lack of transportation?


D. facility of water supply


35. Has the lockdown affected the Pensions / Remittance?

a) Yes b) No c) Do not know

36. Are you getting your full wages / pay during lockdown situation?

a) Yes b) No c) Not getting any wage

37. Are you borrowing money because of lockdown?

a) Yes b) No

If Yes, for what: ____________________

38. Are you getting updates that you require for your business (such as price,

suppliers)

a) Yes b) No c) Not applicable

39. Do you think you will accept any job for low pay because of poor income after

lockdown ends?


40. Are you able to sell your produce/products?


41. Are loan/funds available with inclusive Cooperatives?


42. How are you (person with disability) coping with the financial crisis situation?

115

a. By reducing size and/or number of meals eaten in a day in order that it

lasts long.

b) By changing diet to cheaper or less-preferred foods to have enough food

to eat

c) By selling off some household possessions and/or livestock in order to

buy enough food to eat

d) By borrowing food or money for food from relatives, friends, or

neighbours in order to have enough to eat

e) Not applicable

SOCIAL EMPOWERMENT:

43. Has lockdown affected your participation in the following

A. Panchayat Raj Institution (PRIs) as Members?

a) Yes b) No c) Cannot answer

B. Village relief work?


C. social mobilization with other community members for community issues?


D. participation in village level covid response and planning?


E. Disabled Peoples’ Organization (DPO) meetings?


F. Do they feel that after lockdown, working with community and PRIs will

change?


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ANNEXURE-3

Interview Guide (PERSONS WITH DISABILITIES)


Type of disability:

Age: Sex:

Designation/ Occupation:

Date: Place the person is from:

1. Please tell us about your disability, how are you managing it now during the COVID-19

outbreak and lockdown?

Probe

What alternative arrangements have been made to meet these challenges?

2. Could you describe how the lockdown has impacted your daily life? Describe the

biggest challenges you have faced during the lockdown. How are you dealing with this?

Compassion

Probe

How are you coping with the changes in your work and life due to COVID-19

outbreak?

Have you been able to buy essential commodities related to food, clean water

supply, hygiene and other essential supplies?

Has the lockdown put extra burden on the family savings which was utilized for

treatment?

How has life changed from pre-lockdown to lockdown?

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3. For medical and chronic conditions for which you need medical care, how are you

accessing medical services/treatment during this time?

4. If you need therapy on a routine basis, have you been able to get regular therapy related


5. Where do you get information related to symptoms of COVID-19? Is the information

on COVID-19 in accessible format for you?

What about information related to mental health care?

6. How do you keep yourself away from COVID19 in terms of Self-Isolation, Social

Distancing, Hand Hygiene wearing mask and Screening, especially given your

disability?

7. Please tell us briefly about the psychological impact being isolated at home is having

on you. For example, not being able to see friends or family and not being able to go

out for exercise?

What were the measures you took to reduce the stress or take care of your mental

health?

8. Have you suffered any form of discrimination because of the COVID-19 outbreak?

Have you suffered any form of violence because of the COVID-19 outbreak?

Probe

Do you think being a women/man/girl/boy makes it easier or more difficult in

the current context? Can you explain?

9. As a caregiver, are you experiencing any changes or challenges with caring for children

or other family members with disability at home?

Probe

Has it impacted the health of your child/maintaining hygiene measures to be

taken up for your child and family?

118

As a parent or caregiver, how did you feel when the therapy for your child had

to be stopped during lockdown?

10. Do you think the government has done enough for Persons with disabilities during this

time or could have done more, and do you have any suggestions to prevent negative

experiences during future epidemics?

11. Are there any arrangements/specific plans/programmes been made to meet the needs of

Persons with disability during this lock down by any organization/ institution? Did you

receive this? Did you face any problem?

12. Do you think there are any positive impacts of the Covid and Lockdown?

ANNEXURE-4

Interview Guide for Government officers and Project Managers


Government/ CBM Project Manager:

Age: Sex:

Designation/ Occupation:

Date: Place the person is from:

1. Do you think it is difficult for persons with disabilities during COVID-19 outbreak and

lockdown– how and why?

Probe:

Can persons with disabilities follow prevention techniques like Self-

Isolation, Social Distancing, Hand Hygiene, wearing mask, etc

What about the psychological impact of being isolated at home is having

on Persons with disabilities? For example, not being able to see friends or

family and not being able to go out for exercise

119

2. How do you expect Persons with disability to manage their disability during the lock

down, especially when services are not available and when they need it?

3. What do you think are the best ways to provide therapy/rehabilitation in case a Persons

with disability is confirmed positive of COVID-19 infection?

4. Do you think Persons with disability will require special assistance in this kind of

situation? What do you think will be there needs (Information, services-health rehab,

general, Access, etc.)? Please explain.

Probe

Do you have any suggestions for ensuring the needs of Persons with

disability are considered /addressed during situations like this?

5. What kind of arrangements/specific plans/programmes have been made to meet the

needs of Persons with disability during this lock down in your department, organization

or institution?

Probe:

Has your department/organization done needs assessment during

covid-19 outbreak?

Where do you get the information/ data/ records regarding Persons

with disability, and do you know of any other programs for persons

with disabilities

Do you think you have sufficiently addressed the needs and concerns

of Persons with disability during the lock down with these

arrangements/specific plans/programmes?

6. If there is another lockdown in the future, what kind of arrangements/specific

plans/programs you think will help Persons with disability in your locality?

7. What do you think are the best ways to include persons with disability in the actions to

combat COVID19 and the Lock down? Please suggest

8. What steps should the government have taken to avoid hardship during lockdown?

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9. Would you think the funds for Persons with disabilities programs/ pensions would be

impacted due to the pandemic, do you think the government will be able to allocate

same amount of funds like last year?

10. Were there any issues related to abandonment, violence, abuse reported from

beneficiaries during this lockdown?

a strategic analysis of impact of covid-19

Documents